The Next Round

It’s been a relatively quiet April on the health front, which I am so grateful for. I still had appointments almost every week but they were not necessarily related to diagnosis and treatment. I needed that break, and the universe gave me a win. I’m still filled with frustration about test results, the struggle to get a diagnosis, and the daily battle of managing a nebulous condition, but I’ve been able try to get to a better place this month, reorienting myself into a life that isn’t completely defined by being ill. Listening to the suffering and experience of others, trying to understand the historical civil unrest in my country, helping my family when I can, reading about prehistory, analyzing every detail of the results of the ancestry tests my husband and I did.  

But it's time to re-focus. I start the next round of appointments next week. I see my new local neurologist in two weeks, and I have an appointment Stanford on Tuesday and will finally see my neurologist there.

I’ve had that appointment for almost a year. I saw him last May, which feels like a lifetime ago. I had just finished my first year as a full time professor and it was the most brutal semester I’ve ever been through. I had to go on leave twice during the semester and my symptoms were worsening every day. I wasn’t using a wheelchair yet, but I needed to. I was struggling to drive and my independence was starting to slip away. 

I’m trying not to let the ghosts of that last appointment haunt this one. I left feeling like it was a great appointment but when I read his notes he mentioned that he discerned no walking difficulty and that I needed a “more positive outlook.”

I cried a little during that appointment. Life was pretty bleak at that moment. I didn’t get to say goodbye to some of my classes (again) because I was on leave, in my heart I knew that I was going to have to either radically change how I did my job or it was over, and the mysterious symptoms were only getting worse. Of course I was upset. I try to smile and keep a calm demeanor in appointments, otherwise you end up with notes about mental health and stress if your file, further invalidation. But I’m honestly getting to the point that I don’t care what they say. 

I spent a lot of years trying to justify and explain in appointments to get them to hear me. At this point, I don’t have the energy for that. Now I just try to present my symptoms and experiences and communicate effectively. These are my symptoms. Take it or leave it.

At that appointment a year ago, he explained that my mystery symptoms of weakness, difficulty walking, difficulty breathing, etc were not related to POTS. I had those symptoms for over a year at that point but I was still hoping they were related to POTS so I didn't have to get back on the hamster wheel of diagnosis. He gave me a list of tests he wanted me to do, and as I listened I knew those tests would take a very long time and that a diagnosis was at least a year off. At least. 

I started suddenly having mobility problems about two years ago and I told my primary doctor about it first. He took me seriously and said it was likely something else presenting itself. I refused to believe that at the time but I have told him since then that he was totally right. He figured that out before any other specialist. I really need to send him a fruit basket someday.

I saw him yesterday so that he could fill out my long term disability paperwork, and every time he sees me he asks, “did you finally get a diagnosis?” Nope. Together, we have been fine tuning innovative ways over the last few months to explain and label my symptoms for these forms without using a label that is unofficial, to the point that it becomes a humorous art. You have to laugh at the absurdity of it sometimes.

I don’t want to set myself up for disappointment, but I am hoping to finally get that label in these next appointments. Not just for the peace of mind but mainly because of the material benefits it offers: I could finally put it on my official paperwork, I can wave it in front of insurance companies who want to refuse treatment or deny benefits, and I can have access to other treatments options. If it is Myasthenia Gravis, I'll have a condition that sounds like a Harry Potter spell, so I'll feel pretty special.

I try to remember that a diagnosis is not the end game, a better quality of life is. But I can’t help wanting the diagnosis. It’s been the carrot I hold in front of myself as I’ve gone through all the torture testing for years. Yet, even with a diagnosis I know that my life wouldn’t change dramatically, but damn it would help. 

I’m doing my usual routine of carefully writing out symptoms, notes, and questions, and gathering test results to bring. Most of this has become second nature for me and my husband so it makes it easier to keep going, even when both of us are completely worn down by this process. We are staying in our favorite hotel again next week before my appointment. It’s pricey but I’m very much looking forward to that part. Sometimes it takes little things like this to make it easier, little rewards and treats along the way to make it a little more fun and enjoyable.

So this is what it looks like when you want to give up on this process but you continue to press on, trying to keep a “positive outlook,” keep digging deep for whatever pieces of hope you can find, and remember that you’ve come this far so you can keep beating on. It’s not easy, but it’s not impossible. That’s important to remember.

Whatever the results of the next appointments are, I’ll come home to my life with my cats, my husband, my music, my books, and it will be all good. I'm trying to remember that life will go on no matter what. I’ll keep working toward my goals, trying to create some art and music, write some words that have meaning, exercise as often as possible, and continue to feel grateful for this life and how lucky I really am. 

9 Things to Say to Someone with Chronic Illness

I’ve read many lists describing “what not to say to someone with chronic illness,” so I wanted to offer a new spin. These lists are valuable for the chronically ill and the healthy, but the lines of communication between us can be fraught with misunderstanding. It’s important to recognize that there is a lot we can still say to each other, and these communications can be positive. This is an extension of an earlier post about how to help a loved one who has chronic illness. Of course there is much more that you can say to someone with a chronic illness, but this is a good place to start.

1.  “I believe you”

This one is especially potent. For many of us who have invisible conditions, we hear “it’s all in your head” everywhere we turn. I think there’s a cultural assumption that physical illness manifests in tangible, obvious signs: loss of hair, paralysis, loss of weight, etc. But often, there is no visible trace of debilitating diseases. You can’t “see” a broken autonomic nervous system, or an inflamed colon from IBD, or the ravages of kidney disease. With conditions like Dysautonomia, the medical establishment even struggles to identify and diagnose it because of its nebulous nature; the patient may “look normal” but they live a life that is anything but normal.

If a loved one tells you about their condition, their symptoms, and their limitations, they are showing an incredible amount of trust in you. It may be easy to interpret anyone’s response to their condition as “laziness,” but trust that they are fighting a battle every moment that requires tremendous effort. Recognize the incredible amount of strength it is taking for them to fight this battle.

Saying these words to your loved one or friend is a beautiful gift they will be eternally grateful for.

2.   “I want to understand”

As an extension to #1, I often see in the health communities I’m in people discuss the lack of support they receive from friends, family, spouses, etc. because loved ones do not understand the symptoms of the condition. Sometimes it’s difficult to wrap our brains around all the ways illness can manifest. Why would someone who looks perfectly healthy suddenly start fainting whenever they stand? How is that a thing? Yet, it really is a thing with Dysautonomia. Fact truly is stranger than fiction in the world of illness.

Often when you have a chronic illness, people come out of the woodwork with unsolicited advice and sometimes sanctimonious suggestions about how we should be managing our conditions. This is not the place to start:

A simple Google search can go a long way in understanding your loved one’s condition and symptoms.  Understanding the Spoon Theory also will give you some idea of how they live and plan their life. Asking them questions about their condition and treatment can also give you a lot of information. Your loved one is probably so informed about their condition that they can present a powerpoint at a medical conference on it, especially if they have a rarely diagnosed condition. As with #1, if you say you want to understand what they are experiencing, it shows that you value and appreciate their struggle and efforts to manage their health.

3. “How can I help?”

Learning about their condition may also give some insight about how to help them with their battles. Your loved one may need help with simple tasks, but more than likely your loved one will need your understanding and empathy as they try to live a full life despite illness. 

Asking for help sucks. We are conditioned early on to value our independence and brush off any appearance of vulnerability. I have never ever been good at it, but I have learned that it is sometimes necessary. If you take the initiative to ask your loved one how you can help them or how to be available to help, then they do not have to go through that difficult process of getting the strength up to ask for it.

4. “Can I visit, call, email, text?”

Not everyone who is managing a chronic illness is home-bound. Some of us are, and some of us manage to live full lives. No matter the level of functionality, however, you have your good days and bad days with chronic illness, and we’re in a constant battle with our bodies to force them to comply. This can make staying in contact with family and friends difficult, especially if driving or leaving the house is challenging.

Illness is isolating, devastatingly so. This was something I’ve learned to live with but I was not at all prepared for it at the beginning. I’ve been lucky that my friends and family have been understanding as I have become home-bound over the last year.

Know that your loved one would give anything to be able to have a vibrant social life and be more active, so be patient as they navigate life on their own terms. If you can reach out to your loved one, you can help get them over the bridge of the isolation and bring some joy to their life.

5. “Here’s a funny story”

As an extension of #4, if you can say something to your loved one to brighten their day, that’s usually better than handfuls of chocolate (most of the time at least).

My good friend Carrie Anne has Crohn’s Disease and we usually chat online or text throughout the day, even though she lives not far from me. We call ourselves Team Calamity and try to lift each other’s spirits each day with our affinity for the absurd. When my friends come by and we play games, we unleash the floodgates for trash talking and your mom jokes. These are moments I can try to forget about being ill and just enjoy life, and it’s pure bliss.

Your loved one may sometimes need empathy or a shoulder to cry on, but a good laugh is more powerful than almost anything else you can give them.

6.  “Let’s do something fun that’s within your limitations”

In relation to #4, your loved one may have limitations but they still want to live the fullest life possible. They may not be able to do the things they used to be able to do, but they still want to do whatever they can. If someone puts pressure on me to do something that used to be easy for me but is now difficult or impossible, I shut down. I cannot participate if expectations are impossible for me to meet. 

You can talk to your loved one to work together to find alternatives so they can participate the best they can and still have a great time.

7. “This can be hard for me too”

It’s also hard for friends, family members, or even acquaintances to watch someone suffer, often inexplicably. It’s a frustrating, disheartening, and aggravating process for them too. I think it’s ok to share your own struggles with adapting to your loved one’s illness because it shows you are on their side and invested in their success. I’ve seen this particular problem lead to serious stress or even dissolution of relationships. It’s hard to accept that your loved one has serious limitations and needs help.

Being a caregiver is a tough gig. I’ve watched my husband do it and my dad be a caregiver to my mother, and I’ve realized they have it harder than the one they are caring for. Significantly harder. My husband is the sole breadwinner in our family and carts me to appointments, pushes my wheelchair, brings me medicine/fluids/cats when I can’t leave my bed, and has to pick up the slack on my ever-increasing list of things I can no longer do. This is the case for many people who have spouses who are ill.

The acceptance train is a hard one to catch, but we all have to board it someday, the sooner the better. I don’t mind if anyone wants to say this and discuss their struggles as long as it comes from a place of compassion.

8.   “I support you/ care about you/ love you unconditionally”

This may be a no-brainer. We all need to know we are loved and valued but when you are dealing with chronic illness, this is especially true. I often feel guilt and frustration about my limitations and the efforts those around me have to make to help me get through life. Hearing these words can be a reminder to your loved one that despite the struggles you still love them and care about them unconditionally.

9.   “We got this”

I have learned that managing and living with illness requires a team effort. It’s a collective enterprise that requires the work of your loved one, family, friends, doctors. Many people live a fantasy that they are independent and don’t rely on an interdependent network of support to get through each day. Before I got ill, I did for sure. When you are chronically ill, you can no longer live that fantasy. We have to carry each other. 

We are stronger together and we can face the challenges of life as a team. 

We got this. 

The Will to Keep Going

Too much.

I’ve mentioned throughout this blog that my mother’s health has been declining over the last year, and the last few months she went downhill rapidly. She had to stay with us for a little while earlier this year, but I couldn’t be a caregiver to her because I rely on one myself. This is part of the reason why I was bedridden throughout the end of January and all of February.

I removed myself from the situation for awhile to try to get my strength back, which worked, but she took a sudden turn for the worse during that time. My step-father had to move her into a long-term care facility. She’s 60 years old. It doesn't make any sense.

I’ve tried to help and be supportive to my family, but I'm trying to push through my own challenges.

I’m still dealing with having to resign from my dream job and convincing the disability insurance company that my wheelchair and sedentary lifestyle are not ornamental.

I thought I was navigating all of this with equanimity and then last week I got a message from one of my doctors that sent me over the edge. All of it just became too much. 

I’ve been doing testing for my pulmonologist to identify my breathing issues, especially in relation to my other symptoms. I did a spirometry (lung test) a month ago that was very abnormal. It showed the difficulty I have trying to inhale, so my doctor suggested doing a longer version, which I completed last week. She sent me a message a few days ago with the inexplicable words “everything looks normal.” It may sound strange to be frustrated by “normal” test results, but when you’re trying desperately to get a diagnosis, it can be a punch in the gut, especially when it makes no sense.

The thing that I’m really frustrated about is that I listened to my doctor. For the first lung test I didn’t take the Mestinon, which I have become dependent on to be able to breathe somewhat normally, and the results were very abnormal. For the test last week, my doctor insisted I take it, even though I explained to her my concerns that it would skew the test. And then the results came back normal. I knew I shouldn’t have taken the medication.

I’m in a bit of a predicament. I tested positive for Myasthenia Gravis, I have the symptoms (mobility problems, weakness, fatigue, difficulty breathing), and I’m being successfully treated for it (Mestinon), yet I don’t have a diagnosis. Whenever I explain this to any health professional, they are perplexed as well. This process seems backwards. I'm concerned the treatment options my doctor mentioned such as a breathing machine for sleep are no longer going to be available. I can’t discuss it with her because my next appointment isn’t until July, which feels like a lifetime from now.

I’m angry. I'm frustrated. When I read those words, I went into a tailspin. I told my husband “I’m done. I don’t want to do this anymore. No more tests. I’m done.” I wanted to cancel all of my appointments and tell my doctors I’m not going to be dragged through this process anymore.

I just want a chance at some quality of life. To be able to leave my couch successfully for longer than 30 minutes to an hour at a time. To drive (at least a little) again. To not have to struggle so hard to breathe and move, and maybe someday be able to sing again. To get some of my independence back. To be able to be supportive to my friends and family.

Every test seems to lead to more questions than answers and more tests. They are like gremlins. Sprinkle a little water on them and they multiply into destructive monsters that ransack your cupboards and terrorize your life. Every test seems to move this process one step forward and two steps back. It’s already taken more than twice as long to get this diagnosis than it did to get the POTS diagnosis. 

In the last year, I’ve been told by doctors and insurance companies I can walk “normally,” I’m “not technically disabled,” and my breathing appears to be “normal.” Yet, none of these words match my reality. These words have affected my material experience in terms of diagnosis, access to treatment, and access to insurance, but they do not reflect my lived, bodily experience. They do not reflect my inner truth. Although the question “am I wrong?” bubbles up from my subconscious daily, I know that I am not wrong. I know what the truth is. These words don’t matter in that respect.

So right now, I’m feeling done and tapped out. I don’t want to do any of this anymore. But I’ve been here before. 

Yet, I really believe the universe supplies you with what you need. I don’t have any appointments related to diagnosis or any tests for the entire month of April, which is a bit of a miracle. This gives me some time to recover and try to re-engage in this process--to step away and try to cope with all of the curve balls life has thrown at me. I owe you one universe.

In the health communities I’m in, I see people ask almost daily “How do you keep going? How do you not give up?” There is no answer honestly. There is no secret. You accept that there are times that you don’t want to do any of it anymore and then there are times it is second nature. I just try to navigate the stormy waters of anger, frustration, and disappointment. I wake up and put one foot in front of the other and the march of time seems to continue.

I try to focus on small victories and remind myself of things I have to look forward to: a new book about ancient Britain, playing video games with husband, playing music on sunny days, seeing my friends, hearing my nephews’ voices, the discovery of a documentary I haven’t seen, the prospect of recording again someday. Piece by piece these small glimpses of hope can help, and it can be enough to get by. Eventually I'll get my spark, my spunk, and my snark back.

I’m going to gather all these strands and threads of fate and try to imbue them with meaning and purpose, and then someday I’ll step away and these threads will tell a story that makes perfect sense.

I leave you with beautiful words of one of my favorite authors:

Dysautonomia and Salt: A Love Story

Disclaimer: My degrees in the Humanities do not constitute a medical degree, and I cannot provide medical advice. Discuss any treatment you pursue with your doctor first

One of the first things you will hear after your diagnosis of Dysautonomia is to increase your fluid and salt intake. There’s nothing quite like the cognitive dissonance when your cardiologist tells you to begin a high sodium diet. The mechanisms that cause this problem are complex though simple: when you stand your body must compensate for gravity by increasing your heart rate to keep blood flowing to vital organs; your blood pressure drops a bit and your heart rate increases slightly. The autonomic nervous system regulates these automatic functions that happen in our bodies. At least this is the case for those who do not have a broken nervous system. With POTS, the body cannot compensate for gravity quickly enough. Blood pressure drops and the heart rate accelerates rapidly to keep blood moving to vital organs. With Dysautonomia, the longer you stand, the more blood pools into your legs and feet, making it difficult for the body to get blood to your heart and brain. This is why syncope (fainting) can be so common.

Low blood pressure can be very common with Dysautonomia. Salt helps the body hold onto fluids and raise blood pressure to allow the body to maintain some of the homoestatis the Dysautonomia-free take for granted. Many with Dysautonomia have hypovolemia, low blood volume, as well. Often salt and fluids are the first lines of defense doctors mention even before they discuss medication to manage the symptoms. Many with the condition receive regular saline IV infusions. I'd cut off my left arm to get access to this therapy, but my doctor has forbidden it. My doctor is a leading expert on POTS and has said he is wary of the efficacy of this therapy. I hope he changes his mind someday honestly. 

When I got ill and didn’t know I had POTS, I was weak, I lost about 15% of my body weight, and I could not stand for longer than a few seconds without feeling like I was going to faint. I went on an extreme diet of quinoa and vegetables for a few weeks to see if that would stabilize my system. Absolutely no sugar and no salt. I know now that was a mistake. I wasn’t receiving any medical care besides being told I was just crazy, so I was taking matters into my hands out of desperation. That entire time I craved bacon. I just wanted handfuls of bacon all the time (who doesn’t, right?). I think that was my body telling me I needed salt.

Bacon forever

Since getting a diagnosis, I’ve tried to perfect my regimen of salt and fluids and I wanted to share what I’ve learned over the last few years. Managing symptoms is often filled with trial and error—for the patient and the doctor. Since Dysautonomia presents uniquely for each individual, finding the right regimen can take some time. I’ve tried many forms of electrolytes and salt. Every single day is a desperate quest to get hydrated and be cool and upright like everyone else. I always have at least one drink at all times and usually 2-3 I'm drinking at once. Husband calls it "getting my drank on." This is how a POTSie parties. 

Salt

Salt may be your new BFF and trusty companion. It will always be there to help you get back up and keep fighting. My doctor recommended adding salt to my meals and I keep some sort of salty snack with me at all times.

Many with Dysautonomia become salt connoisseurs, purchasing different types of salt beyond the standard table salt. One type that many love and has become popular with the health-conscious is pink Himalayan salt. It looks like bath crystals but it’s actually salt. It’s been touted as a wonder product in the health community but I can’t find any reputable sources that provide specific evidence for the health benefits (if you know of any please let me know). Pink salt has other minerals besides sodium, making it closer to an electrolyte than a pure salt. I have started using it but haven’t noticed a difference with Kosher salt, which is what I usually use.

The drug most commonly used to treat Dysautonomia and its many forms is Florinef. I have a love-hate relationship with this drug. Many are completely dependent on it to treat syncope (fainting). It helps the body hold onto salt and fluids, which raises blood pressure. Some are advised to take salt pills in addition to the Florinef. I use Salt Sticks because my doctor explained they are less harsh on the stomach than ThermoTabs (which I have but haven’t tried yet). They are designed for athletes and have other minerals in them. My doctor also recommended taking one before I exercising. There is no hope of exercising without salt for me and for many with the condition.

There are drinks and snacks you can use to get salt as well. Some drink broth, pickle juice, eat pretzels, or pour salt onto fruits or vegetables. I drink at least one V8 a day, and when I’m feeling my worst a V8 provides instant relief. V8 has potassium and other vitamins in it as well, giving it some electrolyte properties. I keep a can in my purse at all times because I’ve had too many emergencies without it. I also eat salted almonds all day long.

Electrolytes

Our bodies rely on a careful balance of electrolytes to function, and with Dysautonomia the body struggles to maintain this balance. Drinking excessive amounts of water can flush the body of minerals, and Florinef may help the body hold onto salt but it can leech potassium and calcium from the body. Salt and water are not enough to maintain this balance, so electroyltes are essential in your arsenal of functionality because they give the body a mix of sodium, potassium, calcium, magnesium, other minerals to hold onto fluids and keep this balance. This is a list of different electrolytes I’ve tried but I recommend experimenting to see what works for you.

I’ve tried so many different types of electrolytes through the years that I’ve lost track. The most popular electrolyte on the market is Gatorade. I CANNOT stand the taste of Gatorade so much that I would drink it only out of pure desperation. In fact, during my last ER visit the doctor insisted I drink Gatorade before I could leave and I forced it down begrudgingly. It’s also filled with sugar, which is a common problem among the popular forms of electrolytes out there.

Finding the perfect electrolyte has been a Goldilocks endeavor to figure out which one is just right: not too expensive, provides lasting relief, tastes ok, not too much sugar, and easy to access. Pedialyte has been my go-to electrolyte for two years. It has all the minerals, lower sugar than Gatorade, and makes me feel instantly human. The problem is it’s prohibitively expensive. One bottle costs about $5-6. I would typically drink at least ½-1 bottle a day and on the days when I can’t get off the bathroom floor, I would drink two bottles. I don’t have a Starbucks habit anymore, but this Pedialyte habit became just as expensive.

This is about two months worth of Pedialyte bottles I drank

So I’ve been trying to find something else. I used to use Heed, a powder electrolyte, and mix it in tea and put it in a tumbler when I was teaching. It became less effective and didn't provide what I needed. That’s when I switched to Pedialyte. Powder electrolytes are great for mixing into water or other favorite drinks, and they have the added benefit of portability.

Many in the Dysautonomia community swear by Normalyte. From what I have seen, it seems to be the most popular. I gave it a try a few months ago and only made it through half a cup of it. It was too harsh on my stomach. My insides hate almost everything, and the GI symptoms are my most difficult POTS symptom. I believe it was the citrus flavoring that was the problem. I let my husband try it and he immediately proclaimed, “it tastes like the ocean!” I did not like it but many people use it exclusively. The makers of Normalyte are even working with Dysautonomia International to create a product designed just for Dysautonomia patients. When they do, I will happily try it again in support of this effort.

I also tried RecoverORS, which is marketed as “Pedialyte for adults.” Perfect, right? I also only made it through part of a glass of it. It was also a little harsh on my stomach. If you don’t have a delicate flower of a digestive system like me, these may work for you. They meet all of the other requirements, but I just could not tolerate them. I’ll keep them on hand for emergencies.

I had read that many also use Nuun tablets as their go-to electrolyte. I decided to give it a go about a month ago. Well, I haven’t had any Pedialyte in all that time. Nuun made all my dreams come true! It meets my Goldilocks standards and I haven’t looked back. I like that it’s also portable and comes in many flavors. It’s also much less expensive than Pedialyte at about $17 for 4 bottles of 12 tablets on Amazon. I’ve been drinking 1-2 tablets every day.

If you want a significantly cheaper option, you can also create your own electrolyte solution. You can find many recipes online, such as this one. 

Some drink coconut water regularly as well because it also has electrolyte minerals in it. You can find coconut water in most stores so it is very accessible. 

***

So if your doctor tells you to increase your fluid and salt intake, you have a lot of options to do this and help your body try to reclaim a semblance of homeostasis. I recommend experimenting to see what works best for you and don’t give up hope that you can find a regimen that can help you manage your symptoms.

Trying to fix feeling terrible and faint-y with some Nuun, V8, and tea. From my couch to yours, cheers!