Tag: spoonie

Health, Unveiling Invisible Illnesses

Living With Chronic Pain

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What does it feels like to live with chronic pain? It’s something that you never really get a break from and you can’t remember not feeling it.

At the end of a long day, it feels like you just did the most intense workout the night before, and climbed 50 flights of stairs while carrying someone up. Then, you had to swim a mile in the ocean and forgot to stretch, and you were forced to sleep on the pavement. For me, this is how my body feels on a daily basis.

Every single fiber of my being aches and it always has. This is my normal and something I have grown to live with. I still go to the grocery store, cook my family dinner, make it to events and juggle school, parenting and work. I used to never talk about this because I never knew it wasn’t normal to feel like your scalp was severely bruised because you wore your hair up or switched parts, or that your legs weren’t supposed to feel like they were run over by a truck after a day of work, or like you drank a bottle of tequila the night before (only you don’t actually drink) and have a massive hangover. I didn’t know it wasn’t normal to feel like your feet have been shattered into a hundred pieces at the end of the day, or wake up each night with your back spasming, and let’s not forget the classic pounding headache and abdominal cramps.

I have been told in previous relationships that I was a hypochondriac, or always complaining, so I trained myself to suck it up. Who wants to complain all day or succumb to a life in bed? I can’t be in bed too long anyway. This is my every single day. This is me. So, when you see someone or meet someone, know that we are all fighting our own battles. Pain is just one small layer of the onion. Things are not always what they seem.

Photo by Amanda Eversz

Location: Rockledge Gardens

Dress by The King’s Daughter Bridal Boutique & Formal Wear

Health, Healthy Food, Sweet Tooth

Smoothie Ideas

mistibludream

  • Splash of Pineapple juice
  • Ginger
Health, photography, Unveiling Invisible Illnesses
mistibludream

Astrid is my 12 year old daughter and she also has Ehlers Danlos Syndrome and POTS. She is incredibly strong, talented and beautiful.

Astrid is very athletic and she keeps her Postural Orthostatic Tachycardia Syndrome (POTS) under control by staying hydrated.

Check out our most recent photo shoot in downtown Eau Gallie Art District in Melbourne, Florida.

Photos by Misti Blu

Danceware by Mirella

Mom Life

Mom Life

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Being a mother is carrying a tiny human being in your body for nine months while your flat stomach and perky breasts morph into something you could never image. It’s uncomfortable and emotional from this point on. You become a snot rag and a sleep deprived superhero. All of this happens while juggling a career, relationships and putting yourself on the back burner for years to come.

Being a mother is staying up late to wash that third load of laundry and right when you start to drift into slumber, you hear your baby waking up. It means pausing the movie you are watching 37 times. When you are sick, with a fever and vomiting, you have to suck it up and keep going. There are no days off. If you work, coming home after a long day means a speedy trip to the grocery story before picking up the kids and flinging pots onto the stove.

While you cook dinner, laundry gets started and math questions you haven’t seen in over a decade fog your memory. You secretly google on your phone “how to find the volume of a rectangular prism” and turn down the stovetop because something is starting to burn. You get one kid into the shower after telling them for the fourth time. You finally sneak away to undo the bra that has been cutting into your skin since 6am. Finally a brief moment to use the bathroom after holding it since after lunchtime and someone knocks on the door asking if dinner is ready. Fuck, you also just realized you forgot to call someone back and pick up toilet paper at the store. You are always last to shower and right when it’s time to rinse your hair, the water turns cold.

Being a mother means constantly drilling the meaning of life, good morals, lessons and long talks in hopes that your children grow up to be healthy and decent human beings. It also means getting the eye roll, slammed door, whispering not so sweet nothings under their breath as they walk away and blatant disregard for all that you do. Your stomach is filled with worry each time they get sick or hurt. Your heart literally breaks into two when they get dissed by their first crush at school. You contemplate jail time when you hear about someone else’s kid being a shit head to yours. You have to be the asshole when their C turns into a D right before report cards come out.

Being a mother is a thankless job. It’s being the bad guy, making your children eat vegetables and that they get to bed on time. It’s telling them no when their father tells them yes and you have to deal with the aftermath of a sick or moody kid. It’s a job where you always get criticized and a never ending filing cabinet of complaints. With your spare time, you work and pay bills, balance a chaotic schedule, run to the bank and grocery story several times a week and try not to leave the house with your shirt inside out.

When you walk into your messy home that you just cleaned the night before, dying to get comfortable and sit down, someone is already mad at you for your dinner selection and the toilet is clogged. Oh, and there is a school project due in the morning that you never heard about it and we are out of cat food.

Motherhood: we do it and we do it well, with a smile and lots of concealer. We are tired and sometimes feel invisible, defeated and not good enough. So, while we are your biggest cheerleaders and secretly hope you never move out… don’t forget to say thank you, take photos of us as proof we exist and tell your mom that you love her. That is our fuel, our purpose and what makes it all worth it.

Health, Unveiling Invisible Illnesses

Fight Like a MTHFR!

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New book! Who else is a MTHFR!? Okay, seriously, the MTHFR mutation is actually very common and most doctors do not test for it and many are not educated on the mutation. Who wants mental health awareness!? I sure do.

We also need MTHFR awareness and easy access to testing this common mutation that also causes depression and several other health issues. Did you know that I was diagnosed with severe major depressive disorder and suffered from depression my entire life?

I started seeing a therapist regularly who diagnosed me as “severe” and throughout the process of digging for answers for my health, I discovered that I had an MTHFR mutation. I started l-methylfolate and by the following month, my depression was gone for the first time ever!

No one truly understands depression unless that have it. It isn’t just a stressful day or being in a funk because life has tossed you lemons. It is a dark, heavy blanket of gloom that feels like a mountain of grief in the pit of your stomach. After starting the supplements and seeing a huge change, I went to see my therapist and at the end of our time, she told me that she should have paid me for the session because I lit up her day and counseled her. It was such a sign of relief!

I just got this book by Dr. Ben Lynch to educate myself more on MTHFR so that, in the future, when I get my degree I am armed with the knowledge to make a difference. When you want to see a change in the world, you have to get your hands dirty and do it yourself.

Up to 40% of the population had this mutation. Did you know that folic acid is a synthetic, manmade form of folate? People with MTHFR mutations cannot process folic acid, which is also fortified in our breads and pastas. This leads to a toxic build up and can cause depression, ADHD, anxiety, heart palpitations, brain fog and many other health issues.

Double Strength & Most Bioactive Methyl Folate! Uniquely Formulated with Highest Pharmaceutical Grade Methylcobalamin (B12), Niacin, B1, B2 & B6. Works Synergistically for Max Results-3 Month Supply

Health, Unveiling Invisible Illnesses

Invisible Illness – Dysautonomia Awareness at Local Emergency Rooms

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I have not been confident in my local emergency department to care for me, due to dozens of terrible experiences. Am I mad at them? No. Is it their fault? Not really. This ER is 2.3 miles from my home. I can be upset or I can do something to help myself and others. Thanks to Dysautonomia International, I have access to educational printouts for physicians. I have dropped off information to the ER director and plan to follow up with a call today since he was unavailable.

I want the entire staff to be aware of medical issues that present themselves as ANXIETY. Please rule out other possibilities! Dysautonomia does not show up in blood work and it is common in young women, who are constantly dismissed and labeled with anxiety. There are many causes for it. My underlying condition is Ehlers Danlos Syndrome. Many ERs only factor in ONE complaint and the other 10 issues get tossed aside, which could help solve the puzzle.

Times are changing. I am joining the medical field as soon as I can and I am fighting for a new way of healthcare. This is my ER and I refuse to be afraid to come here, if I am in a life or death situation, because of the lack of knowledge of invisible illnesses. Learn my name. Set aside your ego and let me teach you.

Unveiling Invisible Illnesses

Pacemaker Check

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Despite not having insurance at the moment, I went to my pacemaker check (priorities) and found that 70% of the time, I am paced and have 7.5 years left on my pacemaker. The bad news is that on July 1st, around 4pm, I went into v tach, which can sometimes lead to cardiac arrest.

The good news is that it was likely a result of having a fever, so we know there was a contributing factor. I went to Wuesthoff Rockledge ER, but as usual was sent away and dismissed. I always tell them I feel it in my heart when I get fevers and because I run low, a high fever for me is 100 and up. Fortunately, I made it to Florida Hospital, who admitted me for two days and put me on two IV antibiotics.

This is why I URGE people who are sick to kindly stay away. My heart cannot handle fevers and when I am sick, I am very high risk for an infection to spread to my heart and would need a heart transplant. Because of this ventricular tachycardia episode, I may have to get a defibrillator. Funny thing is, this is what I told them I needed in the first place, but again… dismissed. As you can see, these are constant frustrations being young(ish) and appearing healthy. I am feeding my emotions with Chipotle and studying for my Psych essay exam, trying not to cry in my salsa. I am thankful that I am here.