How to Be an Ally to Someone with an Invisible Illness


It’s #InvisibleIllnessAwarenessWeek. I could try to share with you what it’s like to live with an illness or disability that is not immediately apparent, but others have done this really well already, and let’s be real – I’m not that succinct. Instead, I’m choosing to focus on helping people who have not experienced invisible illness or disability to understand and become allies for people with invisible conditions (we need you, healthy people!). Whether or not you realize it, someone you know is most likely living with one of these conditions. You can help by committing to becoming an ally for them. Here’s how:

1. Keep an Open Mind

Only the person who is close to you and living with an invisible illness can tell you what it is like for them. What they describe may not match what you have heard in the past about their specific condition. Illnesses manifest themselves in a variety of ways, many of which don’t match the textbook description. Try to keep an open mind and believe what your friend confides in you about how their illness or condition affects them. Imagine what it would be like to be in their situation, and what you would want if it was you!

2. Ask, Don’t Assume!

We often take great lengths to disguise how we are feeling from the general public. However, this sometimes leads those closest to us to believe that we are fine because we look fine. Instead of assuming we are as well as we look, ask how we are feeling today (for real).  This is also important to remember when it comes to giving advice. We respect that you are trying to help by telling us about that new treatment you heard of, but ask before you offer up the info! Remember that we have a team of doctors working to help us, and are constantly working to improve our condition. There’s a good chance we’ve already tried the thing you heard about, or learned it’s not an option for us for one reason or another. Try to understand that we probably feel bad about the fact that it didn’t work out. We sometimes feel as if we have failed because we are still struggling.

3. Be Willing to Learn

I am always flattered when a friend or family member takes the time to ask me about my condition, or to research the condition on their own. Broad research may not help them to understand my day to day life, but it does give them a frame of reference when I share my experiences with them. Learning about the condition of the person that you care about is a great step to becoming an ally that understands and is able to accommodate and advocate for your loved one.

4. Be Open to Making Accommodations

Instead of trying to fit your friend into your preexisting plans, ask them what they need to make getting together work. For example, parties are really hard for me (and many others with invisible illness) because they are very demanding physically and mentally, and often occur in loud and bright environments. For me, things that help are meeting in a quiet place, making plans in the afternoon (generally my best time of day), and making plans one on one or in smaller groups of people.

5. Be Flexible 

For many of us, the way we feel and what we are able to do changes from day to day (and sometimes hour to hour). Sometimes, being willing to keep plans up in the air can be an absolute lifesaver. We want to spend time with you, and if you are willing to be flexible about how, when, and where we do so you, we will love you forever. By being flexible you can take a heavy burden off of our shoulders, and reduce the sacrifice that we make to spend time with you.

6. Don’t Take it Personally

Still, inevitably there will be times when no matter how flexible you were, or how many accommodations you were willing to make, we just can’t do whatever it is that we had planned. Try to understand that we aren’t unreliable, our bodies are. We really want to spend time with you, and although I know it’s disappointing when someone cancels plans, try not to take it personally. Do your best to be understanding and get excited about next time. If you really miss your friend, you could offer to come over and relax together. Sometimes showing up says more than you know.

7. Believe (in) Your Friend

This one is pretty simple, but very important. Make the choice to believe what your friend tells you about their life. Understand that while some people will always suspect that they are faking or exaggerating their condition, in actuality they just spend a lot of time faking well. Believe that with the right accommodations, they still have great potential.

8. Be an Advocate

If you are out in public with your friend or family member, you may start to notice that there are people who don’t understand that illness and disability cannot always be seen, and can occur in people of any age. Healthy people often equate disability with old age and/or the use of a mobility aide (cane, walker, wheelchair, etc…). Commit to helping the people around you to understand that disability comes in many forms, and does not discriminate in regards to age or physical appearance. See #2 and ask your friend whether they are comfortable with you speaking out when others are less than kind in their company.

There are undoubtedly more ways than these to be an ally to someone living with an invisible illness or disability, but this is an excellent start. This #InvisibleIllnessAwarenessWeek, commit to be an ally for someone that you love! You could be the person that makes their world brighter.



Dysautonomia & EDS


Dysautonomia, or dysfunction of the Autonomic Nervous System (ANS) is frequently seen in people with Ehlers-Danlos Syndrome (EDS), although not everyone with EDS develops autonomic dysfunction. The ANS regulates things your body does automatically, such as maintaining blood pressure, heart rate, digestion, and temperature control.

Dysautonomia is not rare, but it is under-diagnosed. This is largely because despite it’s prevalence it is isn’t recognized by many doctors. Dysautonomia International is working to correct this. Still, it’s not a surprise that even after having a positive Tilt Table Test (you can learn more about the test and my experience with it here), I had to see more than one doctor just to receive the blanket diagnosis of Autonomic Dysfunction/Dysautonomia. The first cardiologist that I saw wasn’t confident that he could make the diagnosis even after my results indicated that I met the criteria for more than one type of dysautonomia. The cardiologist that I currently see believes that I likely have multiple dysautonomias and differentiating them will be of little value for treatment. The types that it is suspected that I have include: Post Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Neurally Mediated Hypotension.

During the test, my heart rate increased dramatically (by about 80 bpm) and my blood pressure dropped with just as much gusto. I never actually lost consciousness, but was in a state called “near-syncope” which means I nearly passed out. The test was basically a way of calling forth an extreme version of my day to day symptoms. I regularly experience lightheadedness, dizziness upon standing, unstable blood pressure and heart rate, slowed digestion , excessive sweating, and heat and cold intolerance.

After the test, I was given the recommendation to increase my salt intake, along with drinking (even) more water, and wearing compression gear (starting with the athletic leggings and moving to medical grade if needed). Unfortunately, adding salt to my diet was a BAD idea where my migraines were concerned. This is just one example of how having multiple chronic illnesses increases the difficulty in managing each condition. As a result I have since given up the extra salt, and added a beta blocker to my routine. I’m happy to report that after a few weeks, the medication seems to be helping quite a bit. My balance has improved (I fall less), and my ability to stand for extended periods of time and be active has increased. I am optimistic that I can use the medication as a building block for increasing my activity level and my level of physical fitness which should in turn continue to help improve my Dysautonomia symptoms and joint stability.


Dysautonomia International 

EDS & The Eyes

Recently, my eyes became very dry and irritated. Because it was more or less time to go to the eye doctor for a new prescription anyhow (read: I’d been ordering my contacts online with an old script for far too long) I decided to make an appointment.

Because EDS is a connective tissue disorder, it effects all body systems. The eyes are especially susceptible to difficulty because they are 80% collagen (the substance affected by EDS). Some of the eye problems that EDS can cause include: Eyelid laxity, lens subluxation, thin cornea, photophobia (light sensitivity), dry eye,  high myopia (nearsightedness), posterior staphyloma/blue sclera, angioid streaks, retinal detachment, cataracts, glaucoma, and macular degeneration. Because of these risks, people with EDS should have a detailed eye exam each year.

Personally, I am lucky to only have experienced a small number of these things! I do have myopia, photophobia, and dry eye. I also have some abnormalities in the vasculature of my eyes. My ophthalmologist recommended that I  update my glasses (it’s been years since I got a pair) and wear them more often in order to give my delicate eyes a break from my contacts. She also prescribed contacts that are specifically for people with dry eye.

I was not pleased about the idea of wearing glasses more often at first, because I started wearing contacts when I was 10 or 11 years old and am very accustomed to having them in most of them time. Eventually though, I decided to use it as an opportunity to pick out a fun new set of frames, a pair that I thought I’d be tempted to wear more often. I am happy to announce that this approach has been quite successful for me! 

I will be sure to make my yearly appointment a priority now that I know the risks EDS poses for my eyes. 


Driscoll, D., OD, Neumann-Potash, L., RN, MN, & Wyse, P., MD, PhD, FRCS. (2008).Opthamology Medical Resource Guide [Pamphlet]. Ehlers-Danlos National Foundation.

Disclaimer: I am not a doctor. I am simply describing my experience. If you have any concerns about your health, please consult with your physician. 

The Bliss & Bravery I Found in Switching Gears This School Year

Social Media

Fall has always been my favorite. A big part of that, I think is that I am one of those weirdos that LOVES “back to school” time. As a school psychologist, I even chose a career path that would allow me to go “back to school” for the rest of my life. I can think of so many logical and well thought through reasons that I chose school psychology, but I can’t help but wonder how much of it had to do with my love for the excitement that comes with this time of year. I have always been enamored with the ritual of choosing new supplies, and new clothing. Organizing them, and preparing myself for a fresh start.

While I don’t think I’ll lose my affinity for a brand new pen or a pristine notebook anytime soon, it feels wrong to go without saying that this year is different. This is the first year since starting nursery school at at age 2 that I will not “go back to school.” After graduating high school, I moved immediately to college, and then on to grad school after that without taking so much as a gap year. Again, as a newly wed, I sprung directly into the back to school season of my internship. After that, I worked nearly two years in my profession of choice before admitting with much sorrow, but also hope, that I could no longer meet the demands of the position.

This fall, I am working in a job that I love (albeit part-time). I am grateful that this flexible job allows me to still use my unique skill set and training as a caregiver and behavior consultant for a family with four beautiful children, two of whom are on the autism spectrum. I will admit that I am sad that I am not returning to work with my colleagues, but I will also gladly admit that I am excited to be helping four little people prepare for their own adventures this school year.  I have braved the aisles of Target, and helped young people that I care deeply about make their own choices and build their independence. I have attended meetings on the other side of the table, as a concerned caregiver rather than as a school representative.

I feel free; Free from the less than glamorous sides of being a special educator. The paperwork and the pressure. But also the need to pause for a moment and recognize this new season in my life. To say out loud that I am not going back to work in my chosen field this fall because I am disabled by my chronic and invisible illnesses. The irony isn’t lost on me that this is so hard for me to do as a special educator.

I guess, most of all as this school year begins I want to wish love and luck to my fellow educators, who find the energy and perseverance to  do what they do for “their kids” despite all of the difficulties. I want to wish the same to my former students, to the the kiddos who are now “mine” (the very small group of young people whose lives I hope I am impacting in some positive way), and lastly to myself because goodness knows I’ll need it as I continue on this journey to accept myself exactly as I am and give what I can, when I can.



How To Fight Chronic Illness Like A Gymnast

hand stand

Image Courtesy of Lisa Kaman Kenning of Mezzaluna Photography in Huron, OH (Please excuse my lack of toe point – those boots were rock solid) 

You guys, I know I’m behind because I’ve been in a migraine coma for weeks now, but the #FinalFive is cleaning up in Rio!

As a former competitive gymnast, and mega-fan of all things related to the Olympics, I couldn’t be any happier. As a person who has been really sick lately, its a little discouraging to see that there are people out there my age and older in the midst of Olympic glory. If you like me, are feeling a little bummed, try a different mindset. Remember that you’re a fighter too.

Generally, I don’t like to think of myself as fighting chronic illness, because I recognize that my illness is a part of me, and being at odds with myself is silly. That said, sometimes this life is hard. Sometimes it is a fight, and in these times I fight the only way I know how, like a gymnast.

Although I’m no Olympian, the sport I love taught me a lot of valuable things during my formative years. In honor of TEAM USA, I’m going to share some of the most important lessons gymnastics has to offer for a person with a chronic illness.

When You Fall, Get Back UP!

This is gymnastics (and life) 101. You are going to fall (figuratively, and if you’re like me, literally too). When you do, get back up and keep going like nothing happened. You can take time to review WHY you fell, and work to make things better when it’s all over, but in the moment, the most important thing is to get back up.

Set Goals For Yourself (That Don’t Depend on the Actions of Others)

Our coaches impressed on us that we shouldn’t set score goals, because we don’t have control over the judges. Similarly, setting a goal to be pain free would be haphazard. Of course that would be ideal, but I don’t have complete control over whether and how well treatment works. Instead, I set goals that I CAN accomplish. I can choose to eat in a way that supports my optimal health. I can choose to complete my physical therapy exercises. I can work to make sure I remember all of my medication. See what I mean?

You Are Stronger Than You Think You Are, Act Like It 

One of the coolest things that I learned from my years as a gymnast is that I can do hard things. So can you. It doesn’t mean that I should always push myself to do those things if it’s not necessary or is going to come back to bite me later on, but it’s so so helpful to know when I have to do things that are hard, like medical tests and procedure, or power through something that must be done. I can do it (whatever it may be), and if I so choose, I can even do it with a smile. That’s what gymnasts do.

Believe That Nothing is Impossible

This is a fine line for people with chronic illness or pain, i know. The word “can’t” was not allowed in my gym. We were required to do push-ups every time it came out of our mouths. That’s because you never know what you actually can do until you’ve tried (and tried again, and again, and again). So this is my rule, always try. If it doesn’t work out today, it’s okay, but don’t decide that it will never happen. Be like Alice in Wonderland! Some days I believe (and) do six impossible things before breakfast (or at least things which I thought might be impossible that day). On other days I don’t get anything done at all, but I believe that I might be able to do them again tomorrow!

Daily Quotes

Never, Ever Give Up (Never Say Die)

Don’t confuse this one for never rest. Rest is important. Don’t confuse it for not feeling natural emotions (of course you will feel them when you meet adversity). Take time to rest, feel what you need to feel, and then keep on working. Whether it’s working at a new skill in the gym, or working on making progress in the treatment of your chronic illness, don’t give up. Keep reaching for the best possible outcome.


Image is a picture of my relatively more healthy self, rock climbing in college! 

(special thanks for this post goes to all of the coaches whose messages will forever resonate in my heart)

Painsomnia: When Pain Keeps You Up All Night (4)

Painsomnia” is a term used by people with various forms of chronic pain and illness to describe insomnia that is fueled by pain. For people who don’t live with a chronic illness or pain condition, you may be able to relate by remembering the worst flu you’ve ever had.

Remember that time that you couldn’t sleep because EVERYTHING hurt, even though you’d taken medication for your symptoms and to help you sleep? You remember? OK, good. Now imagine it was at least ten times more intense.

People with chronic pain live this night after night. It can become a harrowing cycle, as lack of sleep can ramp up pain levels, and increased pain level means another wide awake night. Even when we take our medication, even when we do everything “right.” Still wondering what it feels like? Let me take you through it hour by hour…

10 PM – This is my normal “bedtime” or at least the time at which I try to go to bed most nights. People with migraine do better with a consistent sleep schedule. Additionally keeping regular hours, in theory, helps your body recognize when it’s time for sleep. Still “bedtime” is in quotes here because I am usually awake well past this time.

11 PM – If I am still tossing and turning at 11 PM I get up and take any medication I think may help. This could include medications for pain/inflammation and/or nausea, a muscle relaxer, and an antihistamine to help with migraine – sometimes this helps me sleep, but it’s not the intended purpose of the medication. I may also seek out ice or heat. Then back to bed. I may try to meditate to distract me from my pain and induce sleep.

12 AM – Meditation is not enough tonight. At this point I allow myself a distraction. Reading is my preference, but if I’m not well enough to read I will go down stairs (so as not to wake my husband) and turn on the TV. As I walk down the stairs every joint snaps, crackles, and pops. I lean against the wall and drag my feet to feel for each step, careful not to fall (again).

1 AM – Although the medication may have dulled my symptoms, I still hurt quite badly. At this point I’m exhausted (if I wasn’t earlier on), but sleep still evades me. I wonder if the government could somehow simulate this unique form of torture.

2 AM – I’m now too tired to stop myself from pondering “WHY ME?” – rational me knows there are people all over the world have it worse, but we’re way past rational at this point.

3 AM – I start to wonder how many hours I have before I have to be awake. A quick check of the calendar reminds me I have two doctors’ appointments and physical therapy scheduled tomorrow. At most I can get 5 hrs of sleep – there won’t be time for a nap either. 

Thankfully, I wasn’t kept up until four or later, but it’s happened before and I’m sure it will happen again. I ended up getting approximately 4.5 hours of sleep on that night, and still had to be able to make it to my doctor’s appointments the next day. That is just one reason that a life with chronic illness/pain can be difficult. Not only do we experience pain and fatigue more often than most, but we are frequently running on just a few hours’ sleep as a result of the beast we call painsomnia. I hope this post helps people who have never experienced chronic pain or illness to understand this facet of our lives a little better! 

Thunderstorms & Pain (3)

I remember a time when I loved storms; the bigger the better. They were magic to me. I grew up in a small fishing town on Lake Erie, in northern Ohio. It seemed like the only things on TV in my house were the news and the weather. When a storm was coming, my mom would quietly make sure that we had all we needed in case of a power outage, while I diligently prepared myself to go outside, rather than to the basement (where my Mom liked me to be). I used to beg my step-dad to take me out to the beach so I could watch the storm roll over the murky green water, and the waves that swelled and crashed on the shore. I liked it best of all when there was a water spout (or two). I loved to stand by and look on as they grew and became more and more wild. I reassured my Mom by reminding her that they almost never come out off of the water, as I ran out the door giggling, headed into the rain. I loved the feeling of the wet wind on my face, and the distinctive smell of a summer storm, so refreshing.

Today, I don’t need the weather channel to tell me if a storm is coming. My joints and my head are privy to that information long before I hear or read about it. It is widely believed that this is because changes in barometric pressure can cause flares in pain and inflammatory conditions. Additionally, there is some evidence that lightening may lead to an increase in migraine symptoms when controlling for the effect of barometric pressure changes. These days, although I still find storms to be beautiful, I don’t get so excited. By the time the storm reaches me, I am usually already in excruciating pain. Every joint pops and aches, and the feeling of pressure in my head in unbelievable.

This week for example, began with 100* heat that made me nauseous and dizzy as a result of my recently diagnosed Dysautonomia. Summer heat often comes with storms, and this week was no exception. There have been at least two stormy days, and I have spent them hidden in the basement (Mom would be proud, but really it’s just dark down there). I do have a few coping mechanisms during these times though, and because I know I’m not alone in facing increased pain as the weather changes I thought I would share them:

(1) Get Somewhere Where You Can Ride it Out

As difficult as it is to handle the pain a storm brings, it’s much much worse if you are trying to travel through it. If you are driving, try to get off of the road. There have been many times that I have pulled my car over at a rest stop and just laid down in the drivers’ seat until it passed. If home is close by, and you are able to go, do it!

(2) Be Kind to Yourself!

If you know storms are a trigger for you, it’s even more important than usual to make self-care a priority. Make time to rest a little extra, whatever that means for you (from an extra long nap to giving yourself a little break from your work)

(3) Be Prepared

Weather is unpredictable, and often times so is pain. That’s the reason I carry all of my “as needed” or “rescue” medications with me everywhere I go in a (giant) bag inside of my (even bigger) purse. Other things to have on hand include pain relieving creams (I use a prescription lidocaine cream, but there are plenty of over-the-counter options to try), heat/cool patches, water, and snacks that fit your dietary needs (for taking medication with).

(4) Pressure and Ice/Heat

The sort of pressure induced pain  (especially head pain) brought on by storms always seems to respond to pressure back against it for me. I  generally prefer ice to heat. My favorite remedy for migraines brought on by storms is a headache/migraine hat (used in conjunction with medication of course). It provides both the pleasant coolness of ice and a gentle pressure (I have no affiliation with the makers of this product, I just like it).

(5) Distraction 

Whether its binge watching your favorite show, using an adult coloring book (or a kids one!), following a guided meditation, or applying a little of your favorite essential oil, distraction can be a powerful tool. I may not be able to will my brain into stopping the pain, but I have learned that its possible to trick it into focusing attention elsewhere for a little while. The pain is still there, but I notice it less.

Do storms increase your pain too? I’d love to hear about it. Comment sharing what type of pain you have that storms impact, and/or what you do to make it through!



It’s been said that a life with chronic illness is boring; monotonous. This is true to a certain extent: I will admit there are days when I’ve watched all of the TV I can handle, but am not well enough for reading or other activities. On those days I get bored and frustrated. It’s also true though, that a life with chronic illness is one that is magnified. Everything the average person feels – the good, the bad, and in between, I believe I experience ten fold, at least.

Earlier this week, I had a minor car accident (I’m fine). All of the things that one experiences after rear-ending someone, I’ve felt, but it’s magnified by my illness. The pain in my body, magnified. The self-doubt and anxiety about getting back in the drivers’ seat, magnified. The blame, magnified, because I wonder if I should give up driving altogether. 

But it’s not just the negative things that are amplified by this life. Although even the happy moments are tinged with pain, the joy that comes with them is multiplied by gratitude. My love for my husband is deeper and more profound because of my illness, and his acceptance of it (and me). My enjoyment of the good times is exponentially increased by the fact that I will never ever take them for granted again. Similarly, I revel in time spent with loved ones because of the very pain that isolates me from them at times. 

I hope that if you, like me, are going through a period of high pain, or a time of increased difficulty on your journey, you will remember that it is not just our pain that is magnified by chronic illness. Hold on until once again you are reminded that the most beautiful parts of life are magnified too. 

What a Tilt Table Test Really Feels Like 

I’ve had a lot of medical tests and procedures in my day, but I won’t lie, this one intimidated me going in. It might have something to do with the name – Tilt Table Test, or the way the table looks if you happen to google it like I did. It sounds and looks like some kind of medieval torture. It certainly wasn’t all of the leads they hook you up to (although I do have a serious rivalry with medical adhesive). 

Look! Photographic proof that im totally comfortable hooked up to a heart monitor – even for days at a time! (Also you can see me taking the selfie in my goofy sunglasses!)

I am here to tell you that I survived, and you will too. It’s not exactly pleasant, but I’ve certainly experienced worse – for example I’d pick a tilt table over a lumbar puncture (spinal tap) any day. I probably should have explained this prior to now, but a Tilt Table Test is a medical procedure that doctors use to investigate the cause of symptoms like fainting (syncope), dizziness, frequent falls, and heart palpitations. As it so happens, these things sometimes bother me. Because of my EDS, my doctors suspect that a type of dysautonomia called Post Orthostatic Tachycardia Syndrome (POTS) is the cause. 

I arrived at the hospital at the ungodly hour of 7:30 AM (which probably wasn’t a bad thing in retrospect since you aren’t allowed to eat before the procedure). The whole thing took only a couple of hours (with recovery taking the longest) and my hubby and I were free to leave by 10. I do not believe that I was required to have a chaperone for this one, but J was off work and happy to spend a few hours surfing the web (and I suppose making sure I was safe). 

When I first arrived they got a urine sample for a pregnancy test (shocker – it was negative!), which is standard procedure for a woman. This means people tell I’m not pregnant like once a week lately 😋. They also completed the rest of the standard procedure check-in stuff. That meant it was time for me to exchange my comfy clothes for a hospital gown large enough for an elephant (they let me keep my pants), and endure the two or three tries it takes a nurse to find a place for an IV without scar tissue these days. Really I don’t mind IVs, but I do remember a time when I was relatively healthy and my veins were good. That was nice. 

In hospital attire at about 8, dont i look pleased?

Once I was all prepped, a nice man came in and assured me that the table would only be tilted once, it would be done slowly, and only tilted  to 70* – like this: 

I found that oddly reassuring, even though I already knew that. He also let me know that I would first spend about 5 minutes laying down while they got their baseline numbers (heart rate and blood pressure). Then they would tilt the table. They would take measurements for another 5-10 minutes (I have read other accounts where this stage took longer, maybe my doctor is impatient 😳) and then give me a medication under my tongue (isoproterenol) that mimics the hormone the body releases when you are under stress. I would then either faint (and the test would be over) or my measurements would be taken for 20 minutes after. 

When I entered the room for the test, I noticed that it was COLD. I slid from the hospital bed I was rolled in on, to the tilt table, and they began to hook me up. A blood pressure cuff was placed on my arm, and a number of ECG leads (like the ones in the picture above) were put on my body. They also put a pulse oximeter on my finger to measure the level of oxygen saturation in my blood. They then wrapped three Velcro straps across my body (leaving my arms free) and secured them so I would be supported if I lost consciousness. When everything was in place they began taking baseline measurements. My heart rate was around 85 and my bp approximately 100/70. After a few minutes the table was tilted. At first I was ok, but eventually became dizzy and sweaty. Then hot and nauseated. What was previously a COLD room felt like someone had cranked the heat way up! This feeling persisted until they gave me the isoproterenol – it felt funny under my tongue. Within a few minutes  everything I had been feeling  before greatly intensified. I began to have tunnel vision and what I can best explain as a “get this coat off of me right now, I’m too hot and I’m going to puke” feeling I sometimes have while driving, except I wasn’t wearing a coat or in a car. My heart began to pound. As all of this happens, people ask you how you are feeling. It was genuinely difficult to fight the urge to tell them I was fine and to instead tell the truth (old habits die hard).  People were telling me to keep my eyes open and stay with them, and from what I understand my heart rate shot up to 165 and my bp tanked to 50/40 before they dropped the table and gave me fluids through my IV. I never technically fainted, because you know, they said to keep my eyes open, and I’m stubborn. Also, they dropped the table when they had what they needed – a positive response. 

The nice guy (I never figured out if he was a doctor or a nurse) brought me a washcloth for my head which helped me to cool off. Eventually, when I felt I could move from the tilt table to the hospital bed, I was taken back to my room. Once I was able to drink and eat something I was  allowed to go home. Although I haven’t had the follow up appointment or received an official diagnosis yet, I have been told that I have some form of dysautonomia (autonomic dysfunction) that caused the positive response. Until I see the doctor again I am supposed to focus on adding salt to my diet, drinking lots of water, and wearing bottoms like leggings that provide compression. A prescription to wear leggings/yoga pants all day, every day? I could get used to that 😋


Guys, I made a mistake. I have a secret. I’d like to take a minute to own up to the mistake, and to tell you something I generally keep to myself.

You might have noticed I haven’t written here in a little bit. That’s because I made a mistake. During a time in my life when I had the energy to write multiple posts per week I committed to writing something positive each Friday. In theory this sounded (and continues to sound) lovely. This was a bad idea for a few reasons:

(1) I no longer have the energy to write multiple posts a week. I was cheery and hopeful that I would be able to maintain that level of energy, but flares or bad spots are inherent to the nature of chronic illness.

(2) Friday is most often my very worst day for fatigue (It’s the end of the week after all).

(3) Because chronic illness is unpredictable, I have trouble meeting timed commitments. It sucks, because that’s not who I am as a person, but it’s the truth.

(4) Lately, for some reason my Fridays in particular have been laden with medical procedures. It’s a little hard (although it might be pretty funny) to write a feel good post when you are coming down off of anesthesia.

Now, when I do have the energy to write I feel compelled to write a themed post because of some stupid rule I created myself. It keeps me from sharing what’s really going on in my life here, which defeats the purpose. Additionally, it’s really hard for me to write a “feel good” post when my heart is breaking at all the hate being expressed in our current society. It’s probably when we need it most, but I can’t just force it the way some people can. I wear my emotions on my sleeve, and I write that way.

So – no more Feel Good Fridays. This doesn’t mean that I won’t write about moments and times in my life and in society that are uplifting, it just means that I’m no longer following an arbitrary rule to do it on Friday, because the alliteration is cute.

Now that I’ve gotten the mistake part off of my chest, I’m going to tell you the secret. The other reason I haven’t been writing: I’m in hibernation.

Sometimes, when the physical pain gets too bad, going out into the world hurts me. Literally. The sunlight that I used to love attacks my eyes and sears my brain. The noises of the outside world are not even interpreted for what they are, they turn straight to pain. Vibrations from each step travel up my legs, through my spine, to my neck and head where they build until walking is no longer bearable.

I handle this by staying in, and sleeping – A LOT. Yesterday I slept until 11:30 AM, then took a four hour nap at 3, and went to sleep around 11. That means that I was awake  less than eight hours. It’s not ideal, but I’m not sorry either. Eventually the pain will let up, and I will resume a somewhat normal sleep/wake cycle, but until then, sleep is pretty much my only escape. I’ll take it whenever it’s available. In fact, I think it’s probably about time for a nap.