Musings of a Dysautonomiac

Working on Being Awesome Without Feeling Awesome

conference videos…

Hi friends!

In my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon as the recordings of the speakers were available. The videos are now up, organized by speaker and topic, at the Children’s Hospital of Orange County website here.

Feel free to share that link with others who might be interested. If you watch any of the presentations, I’d be interested in hearing what you think! Come back and post your thoughts, if you’d like!

Smell ya later.
– Linds

conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!]

photo of ID participant badge

my super fancy ID badge

As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I hear they have been released.

Saturday afternoon featured talks by experts on mast cell activation disorder (MCAD), postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). I’d like to share with you some of the notes I took. They were a jumbled mess, so I have organized them by topic, even if some were from separate sessions on different days. I hope you are able to make sense of them, and find them helpful. Items with ****asterisks are things I found particular interesting.

good tips.

good tips.

Below are my notes, but first, a quote from Dr. Chogle at the conference that is relevant here: “There is no standard treatment for anything in dysautonomia.” Unfortunately, not everything you read below is going to be helpful for you.

 

 

MCAD 

  • the number of patients diagnosed with MCAD is increasing
  • people with MCAD have a constant risk of secondary infection from surgery, sedation, etc.
  • the risk of drug overdose is significant
  • lack of support for MCAD – not generally “owned” by any specialty
  • too much mast cell activity can cause bony erosion breakdown
  • treatment not based on markers
  • common treatment:
    • H1 blockers (antihistamines)
    • H2 blockers
    • singulair
    • cromolyn/ketotifen
    • NSAIDS
    • new therapeutics are expected in the next 6 months, but could not give more information
  • avoid: IV narcotics, muscle relaxants, antibiotics, antidepressants
  • ****drug efficacy of H1 (and maybe H2, I can’t remember) blockers declines by 50% in 6 mos. If you take these drugs, switch types (i.e. fexofenadine – allegra, cetrizine – zyrtec, etc.) regularly
  • mast cells can be activated by psychological, not just physical, event

EDS – I have to apologize. Because I do not have EDS (or, at least do not have any reason to suspect I have EDS), I didn’t pay as much attention to this session as I should have.

  • the types of EDS classifications were first published in 2012, new classifications will be released in 2017
  • classic, hypermobile, vascular
  • tenascin X gene deficiency – easy bruising, MVP, alterations on both copies of genes
  • 1 in 100 have hypermobile EDS
  • vitamin deficiencies (especially iron and vitamin D) are more common in people on H2 blockers or proton pump inhibitors. This was interesting for me to learn. I, personally, have had problems with very low ferritin in the past (mine was a 3) and low vitamin D and always wondered why. If you’re on an H2 blocker or PPI, you don’t absorb some vitamins/minerals correctly.
  • studies have shown EDS patients have long periods of non-REM sleep
  • doctors generally wait until patient is at least 6 years old to diagnose EDS
  • EDS patients may require a slightly higher dose of pain medication because more sensitive to pain
panel of doctors

panel of experts

POTS

  • gravity displaces blood without counteractive factors – blood pools and less oxygen to brain
  • to counteract gravity, humans have:
    • well developed valve system
    • skeletal-muscle pump
  • in POTS, autonomic nervous system affects both of those, making it difficult to fight gravity
  • difference between vasovagal syncope and dysautonomia. In vasovagal, patient is completely fine in between episodes. In POTS, symptoms occur between episodes.
  • normal blood volume in legs is approx. 15%. In POTS, approx. 35%. Think about that – someone with POTS has more than double leg blood volume of a healthy person. That’s gravity and blood pooling at work.
  • studies are ongoing, but suggests for some autoimmune problem – single deletion in genetic code – autoimmune system attacks blood vessels and gut
  • recommend building up lower extremities and strength
  • no evidence of greater risk of heart disease, cancer, etc. in people with POTS, but no lesser risk either
  • counseling can be critical
  • a few people get all better, but most just get better
  • Dr. Grubb indicated that he’s not all that happy with IVIG for POTS.
  • treatment: first try pushing fluids & salt, then midodrine, then florinef.
  • pulmonary function may be impaired in dysautonomia due to mast cell or vagus nerve
  • stroke volume:
    • normal = 3 ml O2
    • peak exercise = 5x normal
    • exercise for dysautonomia = only 2x normal

Pain Management

  • EDS, POTS, MCAD & CRPS may all need pain management
  • treatment of proprioception:
    • compression garments (up to waist)
    • specific exercises
      • walking in water
      • stork standing
      • stand up paddle board
      • do it everyday – if you’re having a POTSy day, do a few leg lifts in bed
  • possible causes of headaches:
    • chiari
    • cervicogenic (from muscles)
    • TMS dysfunction
    • spontaneous CSF leak
    • cranio cervical instability
    • posture (see photo on right for info of why posture is so important)

      posture and head location

      with bad posture, your head imposes almost 4 times as much weight on your neck

  • ****people with POTS stick their head out more due to blurry vision, we tend to push head forward so it’s easier to read. Puts weight on neck, causes bad posture and pain.
  • dense foam padding (Ableware) can be helpful for pain – put it around pens, forks, etc.
  • introduce bracing slowly – 1 hour each day for a week, then 2 hours each day for a week, etc.
  • don’t lock knee when standing for a while (this one’s difficult for POTSies)
  • kinesio taping – leave it on for 3 days
  • **** for localized pain, topical medications are better
  • a swimsuit one size too small can serve as abdominal compression
  • for POTS:
    • stimulants not best choice
    • combo of ubiquinone (CoQ10) and L-carnitine helpful
    • take frequent breaks
    • low dose naltrexone (LDN)
  • Marijuana:
    • for pain, get low THC content, higher CBD content
    • doesn’t (shouldn’t) affect mast cells
    • better than narcotics for EDS
  • Exercise: progress very slowly
  • pain best treated as multimodal, multidiscipline approach, including counseling, massage, acupuncture, music therapy, meditation, physical therapy, etc.

The conference provided dinner for us Saturday evening, and I ate with a couple of my local POTS friends, and met a few new ones. I even had the opportunity to meet the friend of one of my blogging friends (whom I have never met, but hope to someday). Half way through the Saturday afternoon session, I felt like I had already heard all the information before. I even considered cancelling my hotel room, driving home that night and skipping Sunday. But once I looked over my notes, it dawned on me that I had learned more than I realized, and I stayed for the rest of the conference. I’m glad I did.

sunrise

view from my hotel room Sunday morning

“Any fool can know. The point is to understand.”
Albert Einstein

Smell ya later.
– Linds

(wo)man’s best friend…

One year ago today, my life changed. This handsome fella came into my life:

dog

Today is Fletcher’s one year adoption anniversary. I first came across his adorable face when searching a local dog shelter’s website. When I saw his photograph, I immediately fell in love with Fletcher’s golden eyes. We made an appointment to see Fletcher, but were warned by the shelter that he was extremely shy.

dog's faceShy didn’t even begin to describe him. He was petrified. Fletcher wouldn’t make eye contact, wouldn’t sniff us, wouldn’t even look in our general direction. I felt an instant connection with him, and while I’d love to tell you it was mutual, it wasn’t. He was terrified of me. Even after we brought him home, he would try to get as far away from us as possible for the first few days. His anxiety and discomfort was obvious. The shelter had warned us that he had lived on the streets for a bit, but it quickly became obvious that he had suffered abuse as well. He seems to suffer some lingering post traumatic stress, especially when loud noises or stick-like objects are present. Initially he was afraid of most people he met, and at his first few dog park visits he ran away from the other dogs and hid under a table.

dog playing with ball

he was also very underweight.

We set out to prove to Fletcher that we could be trusted by using lots of positive reinforcement and being patient when he showed signs of stress or fear. Fletcher slowly opened up to us and began to trust us. I remember vividly how it felt the first time he wagged his tail when I came home from work, the first time he let me rub his belly, and the first time he let me hug him. I know most of those come easily for most dogs, but with Fletcher they were hard earned. That made them all the more meaningful.

Having a dog with some PTSD isn’t easy. He’s exceptionally fearful of the rollator, or a broom, or laundry hanging to dry, or when our water dispenser makes a gurgling sound. When I accidentally drop something and cause a loud noise, he doesn’t get over it easily, even with lots of positive reassurance. And with my brain fog and poor circulation, I’m always dropping something. It can take 3 days before I can get him to go back in that room. With all of his anxiety and lack of confidence, he will never be a therapy dog.

He doesn’t know what postural orthostatic tachycardia syndrome (POTS) or mast cell activation disorder (MCAD) are. He has never awaken me at night when I get bouts of SVT or when my blood pressure drops. If I was to somehow go into cardiac arrest, he isn’t going to call 911. But he can tell when I feel shitty, and he stays by my side.

dog lying on arm

i melt when he sleeps on my arm or leg.

And, somehow Fletcher’s anxiety has been like therapy for me. Working with him, training him, helping to build his confidence and reassuring him when he’s anxious seems to help control the anxiety symptoms of my POTS. I think somehow when I calm him down, I’m inadvertently helping to calm down my autonomic nervous system.

He serves as a wonderful reminder that we don’t ever truly know what someone else has been through, and it’s not our place to judge whether someone else’s overwhelming fear of a lunchbox is rational. All we can do is rub their belly, scratch their butt, and love them unconditionally.

Sometimes I find Fletcher sniffing the flowers, or gazing off at the mountains behind our house. He constantly reminds me that I’m lucky to be able to sniff flowers or gaze at mountains beside him. I love that he’s existential, like his mama. I’m trying to help him to understand that with 30 minutes of reassurance and me by his side, there’s nothing he can’t do. Maybe he’s teaching me that with 30 minutes of reassurance and him by my side, there’s nothing I can’t do.

And, no matter how bad I’m feeling, how scared I am that something might be seriously wrong, when he lies next to me and puts his head on my thigh, I can’t help but smile.

Happy adoption anniversary, Fletch. I’m glad you’re my dog.

dog in snow

Although Fletcher would make an awful service dog, many people with dysautonomia do use service or therapy animals to help with daily life. If you would like information about service or therapy dogs, there’s some great information here and here.

Friends, tell me about (or show me!) your pets.

“The world would be a nicer place if everyone had the ability to love as unconditionally as a dog.”
― M.K. Clinton 

Smell ya later.
– Linds

chronically ill holiday guide…

Every year I post this guide to the holidays for loved ones of the chronically ill. Friends, I’d love to hear your suggestions/challenges for the holidays!

Happy Holidays!
– Linds

Musings of a Dysautonomiac

I post this every year, so if you gave it a glance last year, you’re allowed to skip this year. Although, if you know anyone with a chronic illness (or, spoonies if you want to pass it along to friends/family), it does help explain why this time of year can be particularly difficult.

The holidays are a wonderful time of togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a chronic illness, holidays have the potential to be miserable.

snowman18Although I wouldn’t consider myself to be religious, the holiday season is my favorite time of year. It is also my most fatigued time of year, but if you need to nap, there’s nothing like napping under a warm blanket, surrounded by holiday lights, with the smell of baking cookies and a flickering fire nearby. Of course, fireplaces in…

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autoimmune disease is a major health issue

Great post about autoimmune diseases (which may include POTS) from my blogging friend. Check it out:

autoaylie

Why aren’t more people talking about autoimmune diseases? We do hear pretty regularly about autoimmune diseases such as diabetes, lupus, and rheumatoid arthritis. But there are so many more. In fact, there are more than 100 autoimmune diseases, according to American Autoimmune Related Diseases Association (AARDA).

AARDA is “dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.” It is the only national non-profit organization dedicated to bringing a national focus to autoimmunity. For more information (or to donate to this important cause), check out their website at: https://www.aarda.org/.

AARDA recently put an insert in USA Today stating that autoimmune disease is a major U.S. health issue. In this awareness campaign, there were some alarming statistics:

  • 50 million…

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further down the rabbit hole…

It has been an interesting few weeks – the Cubs finally won the World Series, Donald Trump will be President, marijuana is now legal in California, and I have two “new diagnoses”, although I use those terms loosely, as one is not really new, and one is not really a diagnosis.

tweet from @tha_linds

i’m oddly proud of it.

For the one that is not actually a diagnosis”: My doctor’s assumption of being peri-menopausal was correct. What. the. f*ck. I’m in my mid (okay, late) 30’s, so this comes as an unexpected shock. I thought I had another 8-10 years. Blood tests showed that my lutenizing hormone (LH) levels, follicle-stimulating hormone (FSH), estrogen and testosterone are all off. Way off. I may also have polycystic ovarian syndrome (PCOS), because my LH is very high, and I have a high LH/FSH ratio. However, my testosterone level is low, which I guess is not typical for PCOS. As you might expect, there’s a huge emotional component to what this all means for me, as a woman. More on that in a future post. I started bioidentical hormone replacement therapy (HRT) last week. Friends, if you have ever taken HRT and are willing to (confidentially, of course) share your experience, please email me at lindsay@dysautonomiac.com.

For the one that is not actually “new”: supraventricular tachycardia (SVT). It was first discovered over 6 years ago, before my POTS diagnosis, during a 2 week holter monitor test. The doctor never said anything about it, and after the POTS diagnosis, I just assumed it was the same thing. My POTS cardiologist just confirmed it’s not. For me, it happens most often in the middle of the night, usually between 1-5 am. Suddenly I understand why I wake up often throughout the night. In SVT, the heart’s electrical system doesn’t work right, causing the heart to suddenly beat quickly for no reason. It’s different from POTS in that it’s not related to orthostatics (whether I’m standing), and it isn’t a gradual increase. With POTS, my heart rate starts at about 58 when I’m sitting, then as I stand it goes (very quickly) to 68, then maybe 84, then 97, then 105 (or higher), all within a matter of seconds. With SVT, it jumps from 58 to 105 (or higher) almost instantly.

Because I already take a beta blocker, I don’t need any new treatment for the SVT. These diagnoses may not seem like a big deal, and honestly, they’re probably not. I’m not worried about either. What worries me is how much deeper down the rabbit hole each new diagnosis takes me.

When you’re first diagnosed with a chronic illness, it feels like you stumbled down into a long, dark cave. At first it’s overwhelming, disorienting. You don’t even know which way is up. Eventually your eyes adjust enough to see the silhouette of your limbs, and you begin to walk, you hope, back towards the entrance. For a while you flounder in the dark, grasping at the walls to guide your way. You hear voices from the people on the surface and assume they must be close, but you can’t see the light.

You walk for what feels like miles in total darkness. Alone. Cold. Scared. It feels like the structure of the cave changes – the passage narrows, the walls close in, the pathway slopes – but you can’t be certain surrounded by blackness. Finally you think you see the smallest glimpse of light. You burst toward it at full speed, clawing at anything in your way, digging your nails into the earth to propel you forward. You’re tired. You just want to let the darkness claim you, but you know if you could just feel the warmth of that light, let it consume you, you could live in the light forever.

But with each new diagnosis, the ground beneath you gives, and you stumble deeper into oblivion. You continue in this manner for weeks. Months. Years. Weaving through the maze in the darkness. Occasionally you find a dim lantern or a matchbook that provides small beams of temporary light. But the light only helps to illuminate the hopelessness of the situation, making you feel more trapped, until one day you finally realize a large boulder has rolled in front of the entrance. You’re never getting out of the cave.

the moonSometimes you find part of the cave where the ground above you has given way, and you can feel the warmth of the sun. You hear the laughter of the people above, see them stepping over the hole and going about their life. In the beginning, they shout down to you regularly, “How are you doing down there? When will you get out?” You respond that there is no way out, you’re trapped in the cave. They shout back that you need a paperclip, or some marmalade, or a bible, as if those would magically lift you out of the hole.

After a while, the people on the surface stop shouting down. You’re less lonely, because you start to meet other people in the cave. You gather together to keep each other warm and to huddle around the small lantern someone found, forming your own community of cave dwellers. Together you long for life on the surface and dream about the sound of the wind rustling the trees, or the feel of warm sand beneath your feet. For a while, those thoughts invade your dreams. But eventually, you begin to forget what it was like on the surface and your few memories begin to feel like a vague recollection of something you once saw on t.v.

You begin to respect the cave, appreciate it’s narrow paths and rocky terrain. You hardly notice the bitter cold anymore. But each night, you and the other cave dwelllers lie beneath the small hole in the cave, staring up with astonishment into the star-filled sky that shines through, wondering why everyone on the surface isn’t doing the exact same thing when the view is so much better up there.

“There is a crack in everything, that’s how the light gets in.” – Leonard Cohen (RIP)

Smell ya later.
– Linds

POTS mini conference…

Great news! If any of you are located near southern California, I highly recommend you check this out!

CHOC (Children’s Hospital of Orange County) is offering a great POTS conference on December 3-4, 2016 in Orange, California. The conference is $25.00 per person for patients/family members. There is also a conference for medical professionals that you can share with your doctor.

The schedule includes speeches from many of the POTS superstars as well as a breakout session for teens so they can connect with others facing the same battles. To check out the full schedule, click here. Topics covered include POTS, EDS, MCAD, and chronic pain. Here’s the list of doctors who will be presenting:

Renee Ballentine

Ashish Chogle

Pradeep Chopra

Jose Criado

Clair Francomano

Blair Grubb

Inderpal Randhawa

Michael Recto

Andrew White

Paul Yost

Neda Zadeh

Although the conference is at the Children’s Hospital, it is for POTS patients (and family members) of all ages. CHOC has arranged for a discount rate at the Doubletree Hotel in Orange County, if you need to stay overnight. There’s also a pizza social (with vegetarian and gluten-free options, I think) on that Saturday night. Should be a lot of fun!

For more information, or to register, check out the conference website. Slots are filling up fast, so I recommend registering soon.

 

when good doctors happen to bad people…

I’d like to think that I’m not actually a bad person, but I’m continuing a theme. After my previous “when bad doctors happen to good people” post – I forgot to mention the doctor who, after talking to me for about 3 minutes told me he couldn’t help me, then proceeded to ask me for free legal advice for the next 15 minutes – I thought I should share some recent positive experiences with doctors so I don’t seem like a doctor-hating asshole.

Gynecologist
Don’t worry, I’m not going to give you the play by play about this visit. As far as I’m concerned, as long as you don’t violently shove the speculum (or anything, for that matter) into my hoo hoo, you don’t talk to me about the weather while you’re all up in my business, and you’re not so attractive (regardless if you’re male or female) that I’m wondering whether I should have shaved my legs, we’ll get along just fine.

What I liked about this doctor is that she really listened to me. I found her online when I was searching for a doctor in my area who specializes in hormones because, as you know from previous posts, I suspect my hormones have been out of whack since I stopped birth control pills. Fortunately, she’s with my medical group so it was a breeze getting into see her. After so many doctors have blown me off as someone who is “too young to have a hormone imbalance”, it was a relief to be heard. She mentioned she thought I could be going through pre-menopause, but ordered a bunch of tests to check. For those who may be experiencing similar symptoms, here’s what we tested:

 

progesterone estradiol testosterone, total
FSH  Hemoglobin testosterone, free
LH Level Cholesterol testosterone, bioavailable
HDL cholesterol LDL cholesterol triglyceride
TSH DHEA insulin

I have a follow up appointment soon to go over the results, but even if everything comes back normal, it was very validating to have someone take my concerns seriously.

Cardiologist (POTS Doctor)
If you’ve read this blog for a while, you probably already know that I have a wonderful cardiologist. He listens, he’s willing to try new things, he’ll joke around with me and say ‘shit’ in front of me – pretty much everything I look for in a doctor. However, my appointment recently was with his PA, and I was skeptical whether she’d be as good. I was pleasantly surprised to find out she is very knowledgeable about POTS and was willing to help in whatever way she could, perhaps even moreso than my cardiologist.

I was discussing with the PA my frustrations at going to Urgent Care/ER when I need saline IV fluids and how I’m treated like a drug seeker. IT’S SALT WATER, PEOPLE. I’m not asking for morphine or heroin. Even the emergency doctors that are willing to provide an IV insist on conducting an EKG and other tests first, which I have to pay for. It’s expensive and time consuming, and often I end up abandoning the idea even if it would make me feel better. The PA offered to write a letter that I could bring to the ER that indicates that I have postural orthostatic tachycardia syndrome (POTS), I am under the care of a cardiologist, I am hypovolemic and a saline IV at that rate of 666cc infused per hour would be beneficial. The letter then presented the symptoms and corresponding codes. I can’t copy and paste the letter here, because I don’t own the copyright to it, but I can share the symptoms and corresponding codes:

Sinus tachycardia     ICD-10 code R00.0

Lightheadedness/Presyncope/Syncope     ICD-10 code R55

Headaches    ICD-10 code R51

If you have difficult getting an ER/Urgent Care to give you fluids without an inquisition, I recommend asking your doctor if they can write a similar letter.

After she gave me the letter, the PA then asked why I didn’t regularly receive infusions. With the beta blocker, my tachycardia is fairly well controlled, and my blood pressure never drops dangerously low. However, even with controlled heart rate and BP, I still can’t stand for more than a few minutes. Because I have low blood volume, she said I would benefit from ongoing infusions, I just won’t need them every week like those with low BP. So, she wrote the order, and it has since been approved by my insurance.

I can’t begin to describe how happy this makes me. I just call the infusion center to schedule an appointment, spend an hour or two receiving saline, then go about my day. I’m hopeful this could have a huge impact on my ability to care for my mom each month. It’s so difficult to help her walk when I have difficulty standing, and the weather recently isn’t helping. Everytime she comes to town it’s hot. Guess which days she’ll be here this week?

7 day weather forecast

can you guess??

She comes to town tomorrow, so it’s too late to schedule an IV before this visit (which is unfortunate because I have had a migraine for two days), but now I even have the option of calling the day after she leaves and trying to get in for an infusion. I know an order for salt water anytime I want it may not seem like a big deal, but if nothing else, it gives me hope.

And hope, my friends, is the biggest of deals.

The miserable have no other medicine
But only hope.
~William Shakespeare

Smell ya later.
– Linds

 

#ThisIsChronicIllness…

Today marks the first day of Dysautonomia Awareness month, and tomorrow is the last day of Invisible Illness Awareness week, so I like to think of today as the “Invisible – Dysautonomia Vortex” where the two cross. The theme for Invisible Illness Awareness Week this year is “This is Chronic Illness” where people are encouraged to share a glimpse into their daily life. If you’d like to participate, more information is available here.

I decided that my contribution to this year’s theme would be to share an average day for me, so a week ago (not this week, as my mom was in town and those days are anything but “average”) I kept a journal of what I did that day to share with you. This is an average “good” day – I made it to work for a full (part-time) day, no trips to the ER or Urgent care, I didn’t fully faint, and I didn’t feel like I was having a heart attack. As you’ll notice, I have included non-illness entries, as my life is not dictated by my illness.

 

5:21 am – wake up to this attractive view:

dog butt

 

5:40 am – Take quick EKG. Check fitbit for sleep statistics. Only woke up 22 times last night. I AM THE BEST SLEEPER EVER.

5:45 am – Take dog out, down electrolyte drink.

6:15 am – Shower. Run out of energy after only shaving left leg. Apparently it’s going to be a “pants” day. Take beta blocker.

7:30 am – Too many palpitations to play with dog, wonder when beta blocker will kick in. Sit in chair and laugh while dog plays by himself. Smooch on dog before leaving for work.

9:00 am – Ignore co-workers: still too many palpitations to have a normal conversation. Try for “cool gal” head nod instead. Fail miserably. Again wonder when beta blocker will kick in.

t-shirt: not all disabilities are visible

my awareness month t-shirt

9:36 am – Moderate pain and fluttering in chest. Very uncomfortable, but had it before, so not worried. Again wonder when beta blocker will kick in.

9:49 am – Finally able to converse with coworkers. Trade Adam Sandler movie quotes.

9:58 am – Suddenly overwhelmingly tired, too tired to stand up. Beta blocker finally kicked in. Make cup of tea to combat fatigue.

10:42 am – Palpitations from caffeine in tea. Debate taking another beta blocker.

11:45 am – Trade slightly inappropriate sexual comments with coworkers. Working in an office full of ladies has its benefits.

12:13 pm – Spend 20 minutes trying to think of that one word, you know, that one word. It means not using correctly. Stupid brain fog.

12:25 pm – Realize I only brought a granola bar and apple for lunch. Stupid brain fog. Eat granola bar and old suspicious looking ketchup packets in work fridge. Pretend its donuts.

1:35 pm – Spend another 15 minutes trying to think of that one word. You know, it means using incorrectly. Stupid brain fog.

2:27 pm – Adrenaline rush when silence in office is interrupted by loudly ringing phone. Spend next 23 minutes convincing my body that I don’t need to beat up, or run away from, said phone.

3:11 pm – Severe tingling in left foot, unable to fully extend. Haven’t had it before, so slightly worried.

3:35 pm – Misuse! The word is misuse!! Down another ketchup packet in celebration.

4:02 pm – Stop to get take out since I forgot most of my lunch. Wait in line to order.

4:09 pm – Leave restaurant without food, after having blacked out from standing too long. Lie down in car while nausea and lightheadedness subside.

4:46 pm – Arrive home from work. Give self pep talk to climb stairs up to bedroom. Make it up stairs without issue. High five dog in celebration.

facebook post

he’s adorable when he remembers things

4:48 pm – Nap.

6:00 pm – Dinner.

7:00 pm – Take dog for walk. Doing okay, so slow jog with dog. And….

7:00 (and 15 seconds) – ….I’m a fricken idiot. Try to finish walk without falling down.

7:15 pm – Soothe after-walk palpitations with delicious mango popsicle.

7:40 pm – Start 7 minute abs workout.

7:47 pm – Stand in front of mirror searching for evidence of abs. No such luck.

8:08 pm – Take handful of pills and supplements.

8:32 pm – Try not to puke from meds.

9:26 pm – Watch Friends reruns something that makes me sound smart.

9:48 pm – Fall asleep to this adorable view:

dog

we like to hold hands

11:04 – Wake up with tachycardia and adrenaline rush. Accidentally grab dog’s weiner while feeling to see if he’s on bed. Find out the gross way that he is.

1: 38 am – Wake up with palpitations and shortness of breath.

3:26 am – Wake up with chest and neck pain.

5:17 am – wake up to this gorgeous view.

dog butt

Friends: There are lots of events going on around the world for Dysautnomia Awareness month. Tonight, the Niagara falls will turn turquoise in honor. Be on the lookout for other events!

“Life is not a problem to be solved, but a reality to be experienced.” – Soren Kierkegaard

Smell ya later.
– Linds

5k walk/run in springfield, oh…

Friends (I call everyone “friend” – if you’re reading this post, we’re friends. Even if it’s not mutual. Deal with it.), if you happen to be in the Springfield, Ohio area, or know someone who is, and do not have plans this Saturday morning, September 24th, please consider joining this 5k walk/run for Standing Up to POTS, a 501(c)(3) organization that supports awareness and research. It’s not too late! You can even show up on the morning of the walk. For more information, visit the Standing Up to POTS walk site.

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