So many things are needed when you have P.O.T.S.
So I decided to make a list of my favorite things!
Need a break from compression stockings?
Try Compression Pants!
Favorite Brand: 2XU
Style: The Elite MCS Compression Tight
Worth the price! Recommended by my cardiologist ! They have different pants with different levels of compression so make sure to not just order any pair!
" The Elite MCS Compression Tight offers unparalleled power and protection against muscle trauma during intense activity. Graduated engineering also offers impressive recovery benefits post exercise. Front panels have PWX FLEX (70D) focused to the quads. Rear panels have PWX WEIGHT (105D) focused to the hamstrings and calves."
We have to be SO careful what we consume having POTS. Since 80-90% of our 4-5Liter fluid intake needs to be electrolytes it is vital those 4-5 liters are not full of sugar, chemicals and things that just make us more sick! Let me introduce to you my two favorite electrolyte tablets!
Brand: NormaLyte Oral Rehydration Salts, Pure
Favorite place to purchase: Amazon
If you follow the Amazon hyperlink, a percentage of sales of NormaLyte Pure goes to research for Dysautonomia
What is amazing about this product, is you can drink it plain, or add any flavor juice to it. I personally love fresh lemons, so I squeeze fresh lemons into my water! The amount of salt in this tablet is also really incredible. Being required to have a high salt diet at times is really challenging with nausea. This tablet helps us reach closer to those individual goes doctors set!
Favorite Brand: Nuun Hydration
Product: Nuun ACTIVE (This is their ONLY complete electrolyte)
Preferred Flavor: TriBerry & Grape
Favorite place to purchase: Amazon
Each tablet contains :10 calories
Favorite Product: A Book!
Name of Product: POTS- Together We Stand, Riding the Waves of Dysautonomia
Favorite place to purchase: Amazon
POTS - Together We Stand: Riding the Waves of Dysautonomia is a collaborative effort of many doctors, teachers, counselors, parents and patients who wove this tapestry. Initially conceptualized as a survival guide for children, teens, young adults and parents; it quickly transcended into this unprecedented, critical volume. This encompassing work responds to the many desperate and heartbreaking pleas of those affected by dysautonomia; included are clear explanations of medical information, evidenced-based research, best practices for clinical diagnoses and treatment options, alternative/complimentary medicine approaches, non-medical strategies, coping techniques, helpful tips, patient rights and options, and inspiring narrative accounts of people living with the syndrome around the globe. The book contributors and its readers join hand in hand to represent the POTS dysautonomia community's shared struggles and hopes, concerns and endeavors, unequivocally serving as a living testament that "Together We Stand." This is the 3rd Edition!
Be Brave and Stay Wild - Katelyn Anderson
If you want to help me complete anything off my list let me know. Love to all xoxoxo
Get 10 people from different countries to send me a post card
Have a bonfire on the beach
- Get a tattoo - ACCOMPLISHED July 2016 -
Get someone to run a marathon in honor of POTS/Me!
Throw a dart on a map and go to where ever it lands
Leave a note in a Library book
Go Zip lining
Spend the night in a tree house
Pay for a strangers groceries
Accomplish a 5k
Go somewhere proven to be haunted
Be part of a child’s “Make a wish”
Adopt a girlfriend for Tucker from a shelter
- Go love on dogs at the Humane Society - ACCOMPLISHED Christmas Eve & Christmas Day 2015
Sing a Karaoke Duet
Go to a Music Festival in the US
Take a Hip Hop Class
Send a friend/family member in need on a romantic date
Send a care package to a child with a single parent
Compliment a stranger
Practice seeing the good
Complete a Corn Maze
Go on a Police ride along
Send someone an anonymous gift
Put change into someone’s expired meter
Have someone donate blood in my honor
Become healthy enough to become a bone marrow donor
Enter my photography into a competition
Have a professional photo shoot done for my website/blog
Contact someone with the same name as me in the world
Attend a black tie event
Find treasure with a metal detector
Slide down a firehouse pole
Go to Oktoberfest in Leavenworth or better yet Germany!
Make Friendship bracelets
Get my photography featured in another magazine
Be in China for Chinese New Year
Fundraise for medical testing
Read one of my poems in a Poetry Slam in Seattle
Be part of a medical mission
Send out 5 cards to fellow sickies
Attend Burning Man? Maybe not possible due to heat intolerance lol
Hike Ape Caves lava tubes!
Drive through the trees in Northern California
Plan a destination vacation with friends.
See Armin Van Buuren & Tiesto spin
What it’s really like to date someone with Postural Orthostatic Tachycardia Syndrome (POTS).
I’m looking good today! To bad my body feels otherwise. Every time I stand up everything goes black, definitely going to pass out, yep. Oh goodness, lets squat down, perhaps my vision will come back, nope not coming back maybe I will lay down… Ohhhh come on please pass!!!! I can’t do this in public!
POTS. It’s great. Not. We look great. Well, we are told that all time. It’s rather aggravating on days you don’t feel well.
I feel like when you are dating with POTS, POTS has to be like the disclaimer. For instance, Hey, ya my names Katelyn, Im 28, ya I live on my own ( just moved out on my own 1 year ago but thats a minor detail right?), I have POTS. Oh what is that? No No No its not marijuana. Its a dysfunctional nervous system…. Then you give your brief description of what POTS is and then have to do the “ya if thats a deal breaker, I understand”.
Most of the time men don’t care. Probably because well… they aren’t always thinking clear and by that I mean they aren’t always thinking with their brain inside their skull but with the brain that lives inside their pants. Don’t take that personal. But lets be real. Men want to get laid. Ladies. You look great. You don’t look like you have POTS.
So, they date us. We push, we over do…. we pay. Then we need down days, then we start working them into the “I don’t feel very well”. Telling them, “Hey go without me, its totally fine”. Ya, totally not fine… but Im going to take a minute and pretend tell you it is fine. Because we are used to being alone. Now, Im sure there are some great guys out there, who have no problem staying in. I just have yet to meet “said” guy.
Thoughts that go through my mind about dating
Don’t mind me while I just sit here on the bottom of the tub babe….No Im not staring at your bum. Do you think you could turn the water down a bit? Your cold? Well Im going to pass out…. remember that thing I told you about called POTS? Never mind… Im going to get out… Why? Oh because Im done showering…. Okay the truth is because its too hot in here, oh so now you will turn it down? Okay well Im going to stand up now… Babe, Babe, Im going to passout…. *Passout* in shower… such an epic relationship building moment…. naked.
“ Don’t mind me and my sexy nude color stockings ”
“ No No, this isn’t lingerie! Its my compression hose! “
“ You like my spandex eh? You’d never know they are compression pants! “
Yea… I think i’ll just stick to not dating for now.
Sometimes people don't know what to say, I'm here to tell you that's okay. At times I still don't know how, or what, to think or feel about getting sick. I say getting sick because it hit so quick, like a rug pulled straight out from beneath my feet. With no warning I landed straight on my ass. I didn't see it coming. I don't think anybody did. Maybe I'm overly honest about my life story at times. The truth is, We live in a world where people are going through a lot of the same things. Some, if not most compartmentalize, put on a happy face to the world and pretend everything's happy go lucky. When in fact they are struggling or know others that are. Or perhaps they are dealing with extreme grief from loved ones being sick, or they themselves are sick or perhaps some huge devastating accident has impacted their lives.
I think it's interesting when people tell me I will get better or I will over come this and finish my masters. I usually respond with no probably not and that's okay and they typically say it again with hope in their voice. Then I repeat a little more firm and a little more directly, no I probably won't get better and I probably won't go back to school. I add the probably for your sake. Not mine. I can see in their eyes that now they are uncomfortable. I am not here to make you comfortable.
This isn't going away. If you think it is please go bury your head in the sand somewhere else. Instead of telling yourself I will get better let's focus on how we can improve my quality of life in the present. I'm hopeful my symptoms will improve and I won't always be in the midst of a super horrible flare but I have accepted this is never going away.
If you're reading this, don't be sad for me. Don't fill yourself with false hope that I will get better. Instead love me. Don't worry about my condition constantly. Just accept it as part of me. Let me rephrase and repeat that. Stop worrying and just love me! Understand that I may not always feel up to going and doing things, or I may have to cancel. Canceling has nothing to do with you, it doesn't mean I don't like you, or want to hang out. I get symptomatic standing in lines.
- crazy hot flash, dizzy, elevated heart rate, low blood pressure, vision comes and goes and then the wonderful joy of fight or flight sometimes kicks in which makes all the above even worse.
I think the hardest part about getting sick is losing friends. I can count on very few fingers the ones that have stuck around. But the ones that have are the ones that would come to my house and just crawl in my bed and chat it up. Now distance just separates us. With new friends it's interesting. They only know sick Kate. Sometimes I wonder if they believe me when I talk about life before getting sick. Only because things are so different now. I know that's silly but I'm being serious. I once was very driven, focused, a go getter and knew what I wanted in and out of life. Nothing could stop me. Now Im just more limited, I don't let illness stop me but I try to find more joy in my day than I once did before, I enjoy the small moments. I stay home and enjoy being alone. While some are all like "Heyyy I got a promotion!" Im over here like " Heyyy I took a shower! Sat on my shower chair and felt like I was dying but I showered! "
Please don't misunderstand this posting. When I say I accept I will have this condition forever. I feel I should clarify and say, I won't stop searching for a magical cure, better treatment and improving my quality of life.
Something I hear far to often is:
"You're so lucky you don't work!"...... Let's touch base on this for a quick second.
Lucky I can't use my degree?
Lucky having a port is to much of an infection risk to work?
Lucky having a weird illness makes my days completely unpredictable?
Lucky my entire family has been affected and devastated by my illness?
Lucky my marriage fell apart?
Lucky I am on disability and don't make enough money to live even a livable life ?
Lucky I'm sick every single day and depend on a caregiver to come in and do my meal prep?
Lucky I don't have to work? Hmmm
I wish it was by luck that I didn't have to work. Luck is winning the lottery. Not being diagnosed with an illness that majority of doctors don't know anything about! Luck isn't being told you're to "medically complex I don't feel comfortable being your physician". Or how about the latest... "I don't feel comfortable following the recommendation of the specialist, can someone else write the order?" or "I'm sorry we can't do that testing here because you don't have a local primary... oh you had to go off your blood pressure medications 5 weeks ago for this test? Yea sorry its policy! We don't take orders from doctors outside our county in case there is a problem with the blood draw" ..... Lucky?
I wish I was lucky. Lucky enough to win the lotto so I could help everyone with POTS have quality of life.
Haha Lucky. It makes me laugh. It's the most ridiculous thing I have ever heard.
Well there's my rant.
Moral of the story, it's okay if you don't know what to say. You don't have to say anything. But if you want to say something comforting, please don't try to tell me I will overcome this, or it will go away and definitely don't tell me I'm lucky.
I'm a warrior and I'm destined to do great things. I just have to find a new path .
But in the mean time just love me.