One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.

How to Help A Friend or Loved One with Dysautonomia (Or Any Chronic Illness)

One of my goals while being on leave was to post more regularly but I hit a really bad patch the last few weeks and didn’t get this post up sooner. But I’m working on getting back to the upswing and writing, walking a bit, and singing to my cats regularly again. My BFF Carrie Anne recommended this topic to me, and I thank her for it. This post is in honor and in celebration of Dysautonomia Awareness Month. 

Although Dysautonomia is an invisible illness, living with the condition has very real ramifications in the lives of patients and their friends and loved ones. The illness can be so devastating that some are unable to do normal activities and have to rely on a caregiver. Everyone needs support in their lives, but for those who are disabled and/or chronically ill, that support becomes vital. 

For many people, it is difficult to ask for help. In American culture, we are taught to value independence and self-reliance. I have found that many who cope with chronic illness once had lives filled with ambition, over-achievement, and self-determination, myself included. When suddenly you are confronted with a life of dependence and survival, there is grief and frustration, which can be difficult to communicate to others. Yet, having a support network that you can trust and rely on can make all the difference for Dysautonomia patients.

Many may think that helping a friend with chronic illness or disability means helping them perform tasks. What your friend or loved one really needs is often intangible. I decided to ask some of the online Dysautonomia/POTS groups I am on about this topic to get their feedback and almost everyone responded with the intangible forms of support. Whether you are a caregiver, a loved one, or a friend of someone with Dysautonomia, I hope you find this useful:

Understanding

Almost every person who responded to my question included this word. Understanding takes many forms, and I believe for many of those who responded it meant trust—trust that even though the illness is invisible, the disabling symptoms are very real. Your friend/loved one is likely dealing with constant dizziness, fatigue, brain fog, nausea, difficulty standing, difficulty breathing, GI symptoms, fainting, weakness, and obstacles performing simple tasks like cooking, driving, showering, or bending over. Their system is on a constant roller coaster ride of fluctuating blood pressure and heart rate because their body is no longer able to self-regulate automatic functions. Even if you cannot visibly see these symptoms, trust that they are experiencing them. They are dealing with constant frustration because of these symptoms and just want someone to understand how challenging life has become.

Many patients deal with constant invalidation, particularly from the medical community. Almost every Dysautonomia patient has at some point heard “it’s all in your head” or “it’s stress.” If a loved one or friend says these words, that invalidation becomes more devastating and emotionally damaging. Imagine dealing with life-altering or even life-threatening symptoms but constantly being dismissed as just “crazy” or “attention-seeking.” The emotional cost of this is unimaginable and it adds to the magnitude of stress illness already causes.

This condition is complicated and rarely diagnosed, so many Dysautonomia patients have to fight hard to “prove” their illness constantly. It can take many years before a patient receives a complete diagnosis. When a loved one or friend just says the words “I believe you,” all of that stress and invalidation washes away. He or she can now be completely honest and authentic with you. It is a true gift. You can even research Dysautonomia, their subset of Dysautonomia, and even their other conditions to gain a better understanding of the symptoms, prognosis, and treatment.

  

 Patience

Many who responded also mentioned this word. I would list this as my number one desired form of support. Your friend/loved one’s life has been completely altered by this condition. They are often grieving their former life and trying to figure out how to continue to live a full or half-full life while ill and disabled. This means they are unable to do what they once could. This could be true in terms of work, social life, hobbies, family obligations, household chores, etc. This illness can alter every aspect of a person’s life. They need your patience because their capacity to do these things has diminished. They may miss family functions or have to get accommodations at work, and they need your patience and understanding that they would rather be fully present in all aspects of life. They are courageously living life and putting on a brave face.

For me, once I became ill I realized how much I had taken for granted in life in terms of what I was able to do. Going to the store wasn’t a massive undertaking. Trying to clean my house didn’t take all day because of constantly having to rest. I didn’t live most of my life on the couch or in bed. Whatever the severity of the illness your friend or loved experiences, they can no longer take participation in life for granted and they need your patience as they try to still participate despite the physical obstacles. Your friend or loved one can be relatively symptom free for an hour or a day and then suddenly bed-ridden. There is often no rhyme or reason, so they need your patience as they navigate the ups and downs of the illness.

Communication

Communication is essential in any relationship, but it takes on new meaning when your friend or loved one is ill. Last week was one of the worst weeks I’ve ever had and by Friday I needed to go the hospital because I was having difficulty breathing and was unable to walk just a few feet. My husband and I discussed whether it was really worth it to go to the ER or not. We weighed the options together and ultimately decided it was not. These types of communications are typical for caregivers and Dysautonomia patients. Sometimes you are faced with very difficult choices because the cost of this illness is paid out financially, emotionally, and physically. Being able to communicate with each other about these choices and the daily struggles of life can make them more manageable because you can tackle them as a team.

National Public Radio recently did a study on stress and the sources of stress, and they found that the highest forms of stress are related to health. What this data doesn’t state is that chronic illness and poor health can be stressful for all parties involved, not just the patient. Caregivers in particular deal with a lot of pressure and stress. I am no professional, but it may be self-evident that communicating with each other about the challenges of dealing with illness could help alleviate this stress.

There’s an undercurrent of guilt when illness takes over your life because how much it can affect others. I often feel the need to apologize to everyone all of the time. If patients and their loved ones can communicate about their challenges, perhaps the emotional and mental strain of illness can be assuaged for all parties. Dysautonomia patients can communicate their limitations and capabilities in terms of housework or what they will need at a social function so that others can help them. Suffering in silence is not a solution. Listen to your loved one to understand what their needs are and this could limit the frustration that often comes with an invisible illness.

 

      Support

Support comes in many forms, and your friend or loved one needs your support. Because some patients are home-bound or are very limited in their activities, they may not get to see friends or family very often anymore. Stopping by their house or calling, emailing, texting to just ask “how are you doing?” or say something funny can really brighten their day.

This illness can be isolating. Many patients never meet anyone else in person who has the same condition and leaving the house is challenging and exhausting. Feeling alone and misunderstood is common. You can check in once in awhile with your loved one or friend to see how they are doing to show them that you support them and think of them. Everyone needs to know they have a cadre of people cheering in their corner, and this is especially true for those with chronic illness.

 

      Saying the right thing

I think many people are worried about saying the right thing to someone with a devastating illness, but I don’t think “the right thing” exists. I think there’s only honesty. Tell your friend or loved one that you miss them, you think of them, you hope their treatment is going well. That you wish them an endless supply of chocolate and puppy kisses. Tell them you don’t understand their condition or why it has altered their life. I only know the wrong thing to say is “I don’t believe you,” but beyond that just be honest, ask questions, and listen. Your friend or loved one probably doesn’t want more from you than that.

Caregiving and support is a two-way street. For Dysautonomia patients, I think we could read these suggestions as “how to help friends or family understand our challenges” as well. We also need to understand, be patient, communicate, be supportive, and forget about saying the right thing. If medical professionals are struggling to crack this strange condition, we can’t expect family, friends, or strangers to fully grasp it either. We’ll get through this together.

I hope I covered most of how to help your friend or loved one with Dysautonomia but feel free to suggest more

For more information on Dysautonomia, visit the Useful Links page on this blog

 

Navigating the Medical System

This is an extension of a recent post, but in this one I want to discuss some strategies I have learned to cope with the frustrating process of diagnosis, treatment, and management. I often think about what I wish I had known when this bizarre adventure started and if that information would've helped me navigate the medical system better. I hope this information is useful for the chronically ill and the healthy. This is also a collaborative post that includes the voices of some other POTSies who share their experiences as well.

I had no idea what I was getting into in 2011, but since then I have learned how to be a professional patient, how to talk to doctors, and how to try to get what I need from a broken medical system. Here are a few things I have learned over the last four years: 

 1. Be Prepared

Before I got ill, I lived in a world of make believe in terms of what I thought doctors and Western medicine could do. Shows like “Mystery Diagnosis” are great for raising awareness about rare conditions but they can make the process of diagnosis for complicated conditions seem so fast and complete. There’s always a happy ending. I know now that this is something of a fantasy. I was better off waiting for my entrance letter to Hogwart’s School of Magic than expecting diagnosis and treatment to be an easy process.

I have gone to maybe 200-300 or more appointments over the last four years and been on the endless hamster wheel of diagnosis and treatment that long also. The process is mind-numbing: see a doctor, wait a few weeks and do a test, wait a few weeks or months and see the doctor again, wait a few weeks and do a test, wait a few weeks or months and see the doctor again, get sent to another doctor, start the process over. Over and over.

When you see a doctor, you are usually one of maybe 30-50 patients that doctor is seeing that day. You have 15 minutes to communicate what a hot mess your life has become and then you are sent on your merry way. I have learned the hard way the Boy Scout’s mantra of BE PREPARED. Write down every symptom and every question that you have. Maximize that brief time. Start thinking about the next appointment, test, or referral and ask about your doctor about it to keep the momentum going because the system is prone to inertia.  Research the procedures and tests you will do to figure out what questions you have.

When my symptoms started, my primary doctor I had then didn’t believe me so I had to wait a long time before I got to see any specialists. So after the treatment he gave me made me worse and he ethically had no choice, I saw about 15-25 different specialists over two years and eventually realized I needed to go to a research hospital. It was one of the best decisions I ever made. This sped along the process because these doctors are better equipped to deal with complicated conditions.

Patients with complex conditions that affect multiple systems in the body have to suffer through fragmented care, meaning they see specialists who can treat one symptom but no one looks at the bigger picture. This is not your doctor's fault; it's unfortunately the way the system works. This delays diagnosis and treatment. This also means that the patient, who is suffering and ill, has to coordinate his/her own care. I spend a lot of time figuring out which test/appointment is next and being the line of communication between my doctors despite not having a medical degree, jumping through endless hoops while being ill. Did I mention being sick is a bitch?

2. Learn the language and educate yourself. Be your own advocate

The thing that makes me the most rage-full is that almost every person with dysautonomia has had to suffer through the “it’s all in your head” trap. Imagine suddenly dealing with disabling and even life threatening symptoms, being afraid, and coming to your doctor to ask for help only for him to tell you, basically, you are imagining it. This experience is almost universal for dysautonomiacs. I believe the fact that it affects mostly young women is part of the problem, but I’ll discuss that more another time. Even after all of these years and the definitive proof I have, I still deal with invalidation from doctors. I’m starting to think that it will never go away.

Therefore, educating yourself and presenting yourself as an informed patient is essential. This is daunting when you are very ill, but it is necessary. Learn the language related to your condition. When I talk to doctors I use words like “autonomic dysfunction,” “differential diagnosis,” “orthostatic intolerance.” Speak their language and more than anything else, advocate for yourself because no one else will do it for you. Refuse to accept the “it’s all in your head” trap and insist on being heard. Depressingly, fighting the medical system can sometimes be more difficult than battling your own illness.

Here are some great suggestions from other POTSies:

Jorden Chelsea describes the obstacles of invalidation from doctors:  “If I would've known then what I know now I would have made appts with endo rheumatology geneticists and autonomic specialists the exact day I got my diagnosis after my stress test. I wouldn't have ignored my symptoms for years and I wouldn't have accepted the misdiagnosis of anxiety from anyone, you know your body best but sometimes I've seen patients completely brush off a symptom they have if a doctor says it's nothing. Ask doctors who they know that can help with dysautonomia and don't be afraid to do your own research and present it to the physician you are seeing. Also talking to others who have the same issues within the area is helpful for finding qualified mds. Definitely compile a list of every single symptom you've experienced prior to your appt even if it seems unconnected. If I could go back I would not have stopped going to the doctors being persistent it took 6 years from the onset of symptoms to the slow progression for them to even order a stress test partially because I kept being told I was fine so I did not stay on top of appts.”

Christy Doe also offers some good advice: “Never go alone to an ER or doctor is my best advice. Then they have to treat you with respect and the dignity that you deserve. And there is a witness.”

Jessica Emerson reiterates this: “I've finally learned to stop going to appointments without a witness--some argue it makes you look funny..."Why does an adult need someone with them?" Because my memory and concentration are next to nothing by the time I've made it inside the exam room. Something healthy people can't understand.”

   3.  Learn the appointment, testing, and referral process

The medical system is slow, bogged down, and will work against you. It takes a lot of time, money, and energy to navigate it, which most sick people are in short supply of. Find out if you need to get a referral from your primary or if you can make the appointment. Because there can be a huge wait time for appointments, tests, and referrals, it is important to make them asap. You can also get on a waiting list and that may speed up the process. Anytime I have gotten a referral, almost inevitably I have not heard back about it. I always call to make sure the doctor’s office received it and try to set up an appointment. Sometimes a referral can get lost and eventually it expires. You could have to start the process again. Don’t be afraid to call and find out what the status of your referral is and if there is anything you can do to speed the process along.

When you finally get the referral and set up a test, you get to enjoy the fruits of your labor. I am not scuba diving here. I'm getting a VNG (videonystagmography). I really can't recommend this one.

4. Taking ownership of your own health: research, make connections, educate yourself  

Finally getting a diagnosis and getting off the hamster wheel is not the end unfortunately. Very few doctors will take the time or have the time to explain all of the details of your condition to you. You will have to gather information yourself. Connecting with other people online who have your condition is important as well, especially with rare conditions. Knowing there are people out there who deal with the same struggles is important for anyone. A word of caution: there has to be balance when researching and making connections. It is easy to make yourself crazy researching and sometimes I find that it is necessary to disconnect and take a break from thinking about being ill to focus on living.

     

      5.  Remember what you are fighting for and remind yourself of it from time to time

I have a had a few moments the last year of asking myself  “Why do I keep doing this? Why do I keep going through this?” I think we suffer through this process because we remember what it was like to have quality of life and to participate in that life. We remember what we have lost.  I don’t just suffer through this process for myself. I do it for my husband, my family, my friends, and all the things I still want to accomplish. You can write down for yourself who/what you fight for, and remind yourself from time to time that hopefully, in the end, it will be worth it. 

In the meantime, focus on what you can control and carve out a piece of happiness and joy where you can.

We can lament all day that the medical system is a for-profit system (in the US at least) that sometimes does the opposite of help patients and in which some who need care the most are denied access to it. We can cry foul that the undiagnosables with obscure illnesses must suffer because there is no profit in treating obscure illnesses, but this is not productive.

We have to work with and against the system as warriors. 

It even works against doctors. My primary doctor confessed to me the other day how much the system gets in the way of the quality of care he can provide patients. Luckily, we are living in an age when health records are digitally stored and more doctors are communicating with each other and their patients using technology. Technology has really helped the patient be involved in the process. The US is working on making health care more accessible and affordable. Patient advocacy and patient participation are becoming more prevalent in medicine . There is hope.

Your health is sacred. It deserves protection and cultivation. Don’t let anyone or anything intimidate you into thinking otherwise. And so we beat on, boats against the currents, keeping up the good fight.




 A patient with Crohn's Disease is working on a great project patients with chronic illnesses can use to keep track of their symptoms and treatment. You can find it here.