Footloose and Not-So Fancy Free

A year and a half ago, I fractured my left foot in multiple places. You might ask how I did this—walking. Yes, it appears I do not know how to walk, a point my physical therapist did note during my recent assessment for therapy for my spine. It took a year for the foot to heal, at least I thought it had healed. An added bonus was 6 months into the fracture, my other foot fractured. It took so long to heal and I’m too scary of a patient for surgery they opted to prescribe a bone-stimulator for me. Fast forward…

Sunday, December 10… I stepped on a dog toy. Within seconds, I heard a crack and snap and felt pain shooting through my foot and leg. Off to the ER I went. After a surprisingly short wait, the physician assistant came in with her cell phone and proceeded to show me the lovely skeletal image of my foot. And there it was, the fourth metatarsal snapped almost entirely in half. She gave me some Tylenol and told me to see my orthopedist.

Two days later I sat grinning in my orthopedist’s office and he asked why. I said for some reason I found it funny that I stepped on a dog toy and cracked my foot again, while my dogs gnaw on these things without any impact on their teeth. My orthopedist looked at my chart and said, well you did it again in the same spot. 3 months, he said. At least 3 months of a walking boot and a broken foot. Then if it’s still not healed it’s some kind of surgery—either a bone graft or pins and screws.

The million dollar question everyone is asking: why are my bones weak? I don’t appear to have a form of bone cancer. My bone density scans are normal so far. My calcium levels are on the normal side. And I haven’t had corticosteroids in 7 months. Nevertheless, my bones appear to be weak… What it all means is the zebra returns. If you forgot what a medical zebra is it’s a person with a medical problem of know known cause.

This is an all too familiar scene.

Trusting Your Doctor

It’s not often you get good news when you have a chronic illness, so it’s important to hang on to it when you do get it. I saw my neurologist for my 3-month follow-up and I’m neurologically stable at the moment. No TIAS, no seizures—in fact my seizures are stable enough that we are reducing one of my medications with the goal of discontinuing entirely.

I have a good relationship with my neurologist—so much so I recommend her to anyone looking for a good one that listens well, stays current on new research, and cares about her patients. I have a lot of respect for her and that builds my trust in her. This is something I don’t give readily. I’ve had a lot of negative experiences with neurologists. In fact, I’m writing my memoir right now and I’m in the chapter that actually examines a period of time when I was searching for a diagnosis and seeing neurologists to get help—what I ended up with—a lot of misdiagnosis, misogynist doctors, and sadly the failure to recognize I was stroking until it was too late to save functioning. Suffice it to say, I trust few doctors and often it takes a long time. When I do have one I trust, I cling to that doctor. My neurologist is one of those doctors.

I think about the process of trust a lot when I think of my doctors. Let’s face it you have to be able to immediately be comfortable with them—so much so you have to be willing to be naked with all your noticeable imperfections dangling out there. You have to be able to talk about embarrassing things as well. And you have to be able to do this instantly. You don’t have the luxury of building up to disclosures that you have in other relationships. Other relationships you can put people through the tests and obstacle courses or a complex maze where you are the center goal. Not with doctors, nope. You have to leap. And some doctors fall short of the catching process.

Trusting my doctors is a core part of my relationship with them and it’s focused on three things. First, their professional confidence: Do they demonstrate they know what they’re talking about. However, there needs to be a lack of narcissism in the process. I immediately feel suspicious of a narcissistic doctor—I immediately start to think that he or she will likely not listen to a darn thing I’m going to say about my experience. Instead they will be preoccupied with their internal thoughts over my external speech. Second, are they capable of sitting there to listen to my story—it’s complicated and it’s been a difficult road, but not knowing it places me at serious risk. The doctor who can listen is a doctor who will earn my trust and will likely take better care of me. Third are they willing to be honest and direct with me. I appreciate here not everyone wants to know what doctors are thinking in terms of diagnosis, but I like to hear doctors work out their diagnostic ideas, even if it means they think a set of symptoms may be due to psychological factors like stress. (I prefer straight physical causes than psychological ones—these seem a lot harder to address.) And finally there can’t be derogatory statements made due to my body or gender—and yes, I’ve had doctors like this. I even had a doctor who sent me a personal letter stating I couldn’t survive without him and needed to stay with him—seriously! Doctors are people first, which means all the issues that impact society are present in the medical field too.

When I think about these criteria, I realize just what an uphill battle a doctor has to engage in to earn our trust or at least mine. But then I add a “tough sh#@%” to myself—it’s my body and I deserve to have doctors respect it.

First-Born Thief

Chronic illness can be a burden on your wallet. A HUGE burden. The reality… my wallet is filled with plastic, and that’s about all it is. Plain ol’ plastic imprinted with a bank name. I think they are worth more than the sum total of my bank account. Every appointment I go to comes with negotiating a balance that exceeds my net worth, which is a fairly depressing experience if I’m honest. It creates an initial moment of anxiety—a kind of panic when the first bills appear, but then more bills appear and the anxiety tips over into the “meh” and some comforting adage about blood from stone. Still I’m glad they no longer have debtor’s prison or indentured servitude.

I’m on social security disability. It took years, three rejections, multiple hospitalizations and a death sentence before I got it. And it’s about $900 a month, which is a big win as I’ve known other individuals earning less than this. And frustratingly, there are politicians and ignorant individuals who think people fake disability so they don’t have to work because it’s a surefire way to make it “rich”. Obviously it doesn’t. Right now I carry a medical debt that requires my paying about $600 a month into a debt management program. Ouch.

Debt management has made a huge difference in that I’m still making payments so no collection calls. But the biggest difference—they call my creditors. It’s like having an assistant to handle all the awkward moments of your life. When I had to contact creditors it would come with a paralyzing fear I’d promise my first born before the call was over. Now I just go online, enter their information and hit “add creditor” and poof!: Some wonderful person in some other state calls and negotiates a reasonable monthly amount. And I get to keep my first born or my dog, since I don’t have a child.

How Low Can You Go…

I try to write blogs as events happen rather than just write about my everyday life, which is decidedly uninteresting to all but my three dogs. As such I’ve kept this blog focused on my illness and when it specifically intersects my average life and shakes it up a bit or rather slows it down to a snail’s pace. I should say that a snail’s pace isn’t necessarily bad with the right attitude—I work hard at being relaxed rather than getting frustrated that my usual hyperactivity has become a slimy, sticky snail trail.

As I’ve written before I’ve recently been struggling with extreme fatigue and lethargy. From what I gather it is worse than the typical Lupus fatigue. When I say snail’s pace I mean it. My life slows down to zero miles per hour and I live in my shell I call my bed with three pups of varying sizes on top of me. When I first started to feel this way I also became depressed, which of course led me to wonder if depression was in fact causing this. However, after making physical and mental adjustments to the situation my mood was fine. So something else was making normal fatigue catastrophically worse (I was sleeping about 16 – 18 hours a day. My day-to-day life was spent dreaming since August).

Then there was a bit of a break thru. I saw my cardiologist this week and my blood pressure was down to 88/50. It’s hard to get up and get moving when your heart isn’t pumping enough blood for muscles and brain. My cardiologist said it was no wonder that I was sleeping so much. It also explained why I fatigued so rapidly after simple activity like walking the dogs. My BP would spike then bottom out. The solution we are now trying is very simple: adjust how I take my blood pressure medications.

I should clarify that it’s a simple solution with a caveat. My blood pressure cannot go high at all and I have high blood pressure. I’ve had high blood pressure since I was 16 years old (thank you mom for the bad genes). But things have gotten complicated now—or more complicated. It was important to control my BP due to my blood clot risks, but now things have gotten dicey. Now my doctors and I worry about my dissected artery that leads to my brain. High BP could cause it to rupture—that would be bad. Additionally, I developed AFib this year and so my rhythm is out of sync (what can I say my heart dances to its own beat). So they focused this year on adjusting my BP meds to help lower it and also normalize my heart’s rhythm.

And down, down, down it went. And I went along with it right into my bed and under my nice cuddly blankets with my pack of dogs.

I have a great cardiologist. I’ve actually been lucky to have good cardiologists since I’ve been sick. My wonderful Dr. Sengupta gave me a workable option. Take my BP daily and based on the result take or don’t take one of my BP medications. I’m on two. One is an Ace Inhibitor (which is also to help protect my kidneys) and a Beta Blocker (to help stabilize my heart rhythm). My Ace Inhibitor, Lisinopril, now sits next to my medication box waiting to come to the rescue if my BP systolic is over 100.

Now this is all well and good. But I now have to establish a routine of taking my BP daily. And I absolutely suck at routines. All routines. All my life. I have failed miserably at maintaining any kind of routine. It’s not out of laziness either—it’s out of some truly bizarre sense of rebellion: how dare I tell myself what to do! Seriously, it’s messed up. If I schedule anything I am bound to cancel it, change its due date, or get preoccupied with something else and run out of time. I am passive aggressive with myself.

So can I do it? Can I take my BP more than just three days in a row? Or will my comfy bed and cuddly puppies win out… Aren’t you just sitting there at the edge of your seat with baited breath!!

Now I feel like going to bed. Night all!

Brain Balloons

About two months ago, my neurologist and I reduced one of the three seizure medications I take in the hopes of improving my fatigue and stabilizing my INR levels (a measure of effectiveness of Coumadin). Well all good things must come to an end as they say. Sure enough my seizures have come back. Seizures are a strange experience and it seems that how we experience them differs from person to person. And even how they emerge within a person can change depending on where the faulty electrical firing is occurring. There’s nothing like your brain being electrocuted by itself.

When I have seizures they are broadly known as partial seizures, as if they not quite seizures. They are seizures but they effect more localized areas of the brain and so their symptoms may be more discrete. Seizures typically last between 1 to 5 minutes, beyond that serious problems in the brain can emerge. My seizures last on average 1 to 2 minutes, although prior to medication I found myself in status elepticus, meaning a constant state of seizure activity. This can damage the brain and requires emergency treatment with high-dose of anti-epileptics. I have an epileptic brain pattern consistent with an old-school diagnosis of organic brain syndrome, which is a progressive form of brain disease. In short, at some point medications will stop working and my brain will develop more significant damage, including memory loss, changes in coordination, emotional instability, etc. So medication management is important and right now it stopped working.

Two weeks ago, I had my first series of seizures that I attributed to taking Benadryl for allergies, yes folks Benadryl can cause seizures in people with epilepsy. However, over the past several days my seizures have gotten worse without Benadryl. When I have a seizure my head feels like someone is blowing it up with a lot of air, like a big balloon. I get dizzy and suddenly start to have coordination issues and numbness and tingling down one side of my face and down the side of the body opposite the side of the brain being impacted by the electrical storm. It lasts about 1 to 2 minutes. And recently it starts back up again. And I feel like a balloon being blown up.

So my neurologist has increased one of my medications with another increase possible in another week if I’m not stabilized. The joys of a balloon brain.

The Jigsaw

I am overweight. Round, wiggly, jiggly and ashamed. I shouldn’t feel ashamed, my weight gain is not a moral failing. It does not come from some criminal act. It does not come from a lack of ability in self-control. My appearance of a round apple is not because I have rejected healthy food, moderation, or even movement. I look different than the social ideal. Each part of my body deviates from a surface ideal of rail-thin women with China-doll delicacy. I am thick, sturdy, a Venus Willendorf rather than a Venus de Milo, pendulous boobs and a stomach plump enough that when I give myself injections they don’t hurt.

My weight gain is a direct outcome of my illness—the combined effect of medication side effects, the inability to move coupled with enormous dietary restrictions due to Coumadin. I’ve lived with its fluctuations now for twenty years and at forty-two I am starting to accommodate to the companionship of this weight. Yet, despite these well-known factors I enter several of my doctors’ offices with dread as they decide to remind me that I’m obese. They tell me this with a serious, almost stern, expression as if I have no idea that my body has exploded outward.

When they make me stand on the scale I feel a well of shame. That I have failed in some significant way to live up to the social expectations of what a “good” person should be. Even though my rational mind knows full well there is no linkage between a person’s integrity and worth and their number on the scale, my self-perception born and raised in a culture that values thin women—or more accurately women who look and act closer to porn stars or the emaciated image of the waif-models who bear striking resemblances to women whose lives have been battered by heroin addiction—cannot make the distinction. In the Mirror I am a failure. A feeling that is often reinforced as I am lectured by physicians.

Physicians are not trained in multicultural counseling or multicultural perspectives that modern Psychology has espoused and currently teaches its students. Physicians are trained in parts. A body broken down into sections like a jigsaw puzzle. When illness strikes, the puzzle shatters into a million pieces and the physician has to figure out how to put it together again. But rather than having your unique image to go by, they work off the template of what is the social norm—how your body should be normal and how it should look. This creates a problem, a disconnect between them and me. They are attempting to trim my jigsaw pieces to fit an image I no longer even approximate.

Now not all my doctors do this, some have enormous understanding about how my body has fallen to pieces and what it might look like put back together: an image that incorporates my brokenness rather than seeks to deny it. These doctors see my weight as something that causes me emotional pain and is one more aspect of my life my illness has wreaked havoc. They do not see my weight as something shameful, something that cannot be hidden because no clothing designer makes vertical stripes for women. They quietly ignore the scale and focus on what is working well for me right now and look practically at what aspect of my illness needs further treatment. They know that the illness is the problem, not the weight, not some shameful behavior or lack of control. Weight is just another piece of the puzzle.

The doctors who highlight it typically don’t understand the extraordinary pain that I deal with on a day-by-day basis. Pain is another of those nebulous jigsaw pieces that is treated with suspicion and assumption of some moral failing. I often feel compelled to inform doctors that I don’t rely on pain medication in order to separate myself from their social image of someone with opiate addiction. This too is a jigsaw piece often emerging not out of moral failing but out of deep psychological pain and/or physical pain. These doctors lack empathy and an understanding that to eradicate symptoms, one must dive into the depths of disease—a murky landscape of often times incurable problems. A place where doctors confront the limits of their knowledge, the limits of their science.

I often come down to wondering if what informs our social ideals that cause so many problems for those who deviate doesn’t come down to a very naked truth of our powerlessness—that life is out of our control and the jigsaw puzzle that makes us all up is often hard to piece together because we are ultimately putting it together with the wrong pictures.

Peaks and Valleys

My illness can be mapped in parts—moments of exacerbation and stabilization, a kind of new normalcy. There is the beginning of the illness that I barely noticed so subtle was it. Pain here, pain there—a strange neurological blip of physical unsteadiness. There were the slips of the fingers on the piano during songs I knew well. Then there were periods of silence, where these subtle changes slid into the background as if they hadn’t been there at all. Everything was inconsistent and separated by gaps in time. Things were so subtle, persisting that I assumed everyone felt as I did. To me, the idea of illness never entered my consciousness. I was certain what was happening happened to everyone, after all I could still run, work, hike, and engage in normal activities. Things just intermittently went wrong—like a barely perceptible distortion in a painting. A happy image marred by one figure frowning. Had I been less ignorant about what illness looks like, I might have picked up on that twisted grimace in the painting. But during this period of time, I was living with a new normal. Normal being the operative word.

Then there was the time after pneumonia. My personal life had become inordinately stressful and I ended up with pneumonia. This, too, seemed normal and just one more horrible stressor I had to cope with. But people develop pneumonia all the time. I was just fortunate not to end up in the hospital. But something shifted after pneumonia. Suddenly the intermittent blips became persistent. Neurological symptoms and severe spinal pain all started to worsen. I no longer could write them off as normal, as suddenly I was no longer able to get out of bed, my spine was froze stiff and any movement caused severe, unrelenting pain. That was the period of time when symptoms seemed most visibly a rheumatological disorder. It took four years and 6 doctors to get one diagnosis of Ankylosing Spondylitis.

But things didn’t stop there. By 2006, my illness went into the next stage of development. I started to infarct in my organs. First my brain with a stroke and three TIAs in one week beginning October 7, eleven years ago to the day I write this. I would go on to have two more TIAs after the first three, a bowel infarction and two kidney infarctions. But there was still no clear diagnosis—or at least no one wanted to make the diagnosis that would ultimately lead me to lifelong Coumadin use. That wouldn’t come for another seven more years despite bloodwork that determined the cause. However, in 2009 I was diagnosed with Systemic Lupus and by 2010 with Sjogrens. I was also diagnosed tentatively with something called MELAS. I consider this the third part of my illness as by 2010 medications were helping and I hadn’t had a stroke on the blood thinner I was on. Things seemed to be looking up.

Then Hurricane Sandy happened and what had been a remission began to turn into downward slide. My rheumatological symptoms began to break through the medications. My doctor scrambled adding different medications, but nothing was working. And soon the infarctions started again, this time in my eye. This finally prompted doctors to make the official diagnosis of Antiphospholipid Syndrome and put me on Coumadin. With the addition of a TNF-blocker called Cimzia, a chemo medication called Methotrexate and Coumadin, it was believed that my body would settle down. And it did for a short period of time. Then 2016 came around and the therapeutic level of Coumadin bottomed out and I started stroking. I’m in this stage now where my illnesses have progressed, while stable in a new normal they have worsened.

This is the flow of chronic disease. It is full of peaks and valleys.

Physical "Ouch" Therapy

I’ve begun physical therapy again. This is an intervention I’ve become all-too familiar with having gone through it multiple times for stroke recovery, shoulder injury, and of course my spinal disease. Well, I’m back in therapy for my spinal disease, Ankylosing Spondylitis, which has progressed substantially this year with new fusions in the sacroiliac and neck regions. This has caused unbearable pain and for the first time since 2000, I have been on narcotic pain medications to manage it. Well, now that things have settled down due to lots of prednisone, my pain specialist felt it was time to go into physical therapy again to help maximize my benefits while I’m still in pain management.

Now, this is no simple matter for me. I have something called Body Dysmorphic Disorder, which I don’t talk about often, nor have I written about. But briefly it’s a psychological disorder that causes one to become hyperfocused on their body coupled with severe negative self-perceptions. I’ve had the disorder since I was about 12. One of my greatest struggles is seeing myself in a mirror. I become obsessed with my own image and not in any Narcissus-kind of way where he was in love with himself and spoke lovingly about his visage. No, my inner dialogue is destructive; it’s cruel; and it’s difficult to control. Now you ask what in the world does this have to do with physical therapy…

When I went for physical therapy on my shoulder, the place I went to was wall-to-wall mirrors. It became such a torment to go that I had my significant-other calling me out sick for my appointments until I stopped all together. Knowing I had to go to therapy again, I changed where I was going. I assumed that if I went to a large medical-based facility there would be less emphasis on body that this more sports-based rehab center had and more on actually helping patients with diseases. The night before I had to go I took twice my prescribed dose of antianxiety medication I was so terrified about having to face mirrors AND people looking so closely at my body.

So when I got to physical therapy, my first act was to scan for mirrors and with relief there was only one mirror the size you might have on the back of a door. Phew! The next thing I did was look for people with my body type. I’ve become overweight over the years due to the combined effect of too much prednisone and too-little activity. Another phew, not only were their different body types at various zones in the giant therapy room, but even several of the therapists were overweight. This put me at moderate ease, but I still scanned the room the whole time I was there to make sure no one was looking at me. Not only do I hate mirrors because I can’t disengage from them due to focusing on barely visible problems, asymmetries, or color changes (with Lupus I get the typical Lupus skin changes on my face), but I am preoccupied with how others must be looking at me. Thankfully, everyone was focused on their own tasks and I disappeared into the blur of activity. This was the perfect place for me.

While I was filled with relief that I didn’t have to worry about my body like I often do when I am out of my comfort zone, I did have to deal with the sheer challenge that I was going to be undertaking in the therapeutic process itself. Can I have a collective OUCH. There was a reason my pain specialist prescribed therapy while I was still on pain medications. I have a great physical therapist. And he has decided to challenge me and body parts. Body parts that just don’t work because of so many strokes coupled with nerve and joint damage.

So this week I spent 5 hours in physical therapy having joints rotated this way and that. Having to sit on a giant yoga/pilates ball that I thought was going to go flying out from under me or worse yet pop! while I lifted weights. Oh and having to relearn how to walk again. Who would have thought walking would be such a challenge but apparently, getting my legs to walk was not enough. I must sash-shay about with my arms a-swinging. And when I was all done, stepping, lifting, twisting, crunching, bouncing, pushing, and sash-shaying I thought I was going to fall down, go boom. And yet, I will go back to torture myself some more next week.

On the Rollercoaster

I have a condition known as antiphospholipid syndrome—how’s that for a mouthful. It’s associated with Lupus and is when your body causes your blood to clot leading to life-threatening blood clots that can occur anywhere in the body. Since developing the condition, I’ve gone on to have about 15 transient ischemic attacks, 3 strokes, 2 kidney infarctions, 1 pulmonary embolism, a mild heart attack, and a dissected artery. Needless to say, I’ve been in the hospital due to this disorder a lot. There is no cure and treatment is to keep the blood thin with regular Coumadin (AKA warfarin).

When you are on Coumadin, you have to have bloodwork that measures something known as the INR (international normalized ratio). This informs the doctor whether Coumadin is keeping your blood sufficiently thin to prevent infarctions. Because my APS along with all my autoimmune diseases is severe and responds poorly to Coumadin, I have to have bloodwork every week, two times a week. I have a machine that allows me to check at home and then I go to the Steeplechase Cancer Center to see my hematologist for my weekly check-up. My doctors have to keep my INR between 2.5 and 3.5, preferably around 3, as I’ve infarcted at 2.1, which is rare.

And every week I measure my INR, we dip or rise on a rollercoaster. This past Friday, I was 3.7, which was too high and required me to hold my medication for 2 days and drop down to 6 mg of Coumadin from my usual 7 mg. When I tested yesterday, I was dangerously low at 1.4 requiring me to take a Lovenox shot as emergency treatment today and tomorrow. And the shot is painful! Man does it hurt.

My numbers are so erratic, the nurses at the cancer center all look at me with trepidation when I come in with my paper with my latest result from the lab next to the treatment room. They greet me with a suspicious look of “What number are you today? Are we good?” Most of the time it’s not. Although when it’s high I usually shrug it off because it’s better high then low. Low means possible death, high just means “don’t cut yourself with a razor shaving”.

Today it’s a day where my emergency go bag is ready, my medication and doctor lists are ready, as is my Do Not Resuscitate form. Ugh. So taking a wild ride on the rollercoaster.

Words, Words, and Gobbledygook

Words are a passion of mine. I have been in love with words ever since I was a child and they were undecipherable mysteries, lines and curves arranged on pages. To me a book was filled with possibility and this translated at a young age into a love of theater. The best of worlds: words and performance. I could take the words I would turn over in my head and bring them to life—listening to their sound, the rhythm of a sentence. When you have a left-hemisphere stroke chances are your language centers, roughly defined as the Broca and the Wernicke parts of the brain (although new research has shown language is a whole-brain activity) will be impacted in a negative way. We engage with language in three general ways:

1. we receive it and decode it (using hearing or visuospatial aspects of our brain + memory + Wernicke’s speech center);
2. we produce speech (using Broca’s region—a combination of motor + language- and context-specific memory—roughly); and
3. we read it.

In a left-hemisphere stroke any one of these areas can be a problem temporarily or permanently. When I had my strokes, I had Broca and Wernicke strokes among many other types in other regions of the brain.

I have permanent damage in the speech production and reception regions. With damage to Broca I move between being frustrated because I cannot form the right words and it comes out all jumbled together or I cannot find the right words to say in the first place. I think everyone can relate to challenges in Broca. Most people have had moments in their life where they say the wrong words, mispronounce words, or simply cannot find the words to speak in the moment. For me, it just occurs a bit more often than the average person. What is most frustrating for me is the damage in my Wernicke region.

It took years to figure out it was not a problem with my hearing but a problem with decoding what was said to me. When I had my first stroke in this region, I described it as a Charlie Brown moment. Everyone started to sound further and further away and their words became mumbles like the adults in Charlie Brown. Everyone had a case of the “Mwa Mwas”. After I was stabilized and the clot broke apart or just continued into a larger blood vessel and stopped bothering my brain, the damage was done—subtly. And it came in appearance of hearing loss.

I say “what” a lot. I have days when I can’t understand what is being communicated to me. Words sound run together with only 1 or 2 distinguishable words in the process. And the more stressed I am, the worse it gets. When I said “what”, no matter how many times the person says the same sentence I still hear it as undecipherable. This then leads to a frustrating situation of the person speaking louder and getting more annoyed because I still don’t understand. As such, I find myself now saying something like “can you rephrase that?” If, of course, I can remember that phrase in the moment.

Yet, I have found there is a general loss of recent years. There is a sluggishness in my overall comprehension. And that translates to my writing as much as it translates to my speaking and listening. It is hard to describe the sensation that happens, but it is as if I am pushing against a heavy wall with all of my weight and it barely budges. I find myself staring at the screen for thirty minute stretches of time, the laptop heating up my lap, as I try to figure out what I’m going to say and what I’ve already said. What used to take minutes, takes hours. Words simply do not flow as they once did in my brain. They move like a car in heavy traffic, where everyone is tailgating. Start, stop, start, stop, stop, stop, stop, start… I also describe it as if I’ve hit a wall of words—I am too close to distinguish them all and must step back and carefully read aloud in my mind so that I understand what is being said.

There is a sadness when I think about my life in theater surrounded by beautiful words, by rhythm, by fluency. It is a world that is far away now, a lifetime ago. In the place of these beautiful moments are episodic periods of gobbledygook and mwa mwas. All because of small bits of damage to the delicate, spongey tissue that is my brain.

Purpose Part II: The Road Not Taken

My purpose blog garnered quite a bit of feedback; I think because it seemed so downcast and somewhat hopeless. I should write that I am not without hope nor do I feel the weight of a day-to-day search for meaning. Most of the time I am actually quite happy and feel that, while I feel I lack some centerpoint on which to direct my soul, I do feel I have important actions to take and relationships to cultivate and value. This is quite a full life and I think one that most of us have. Yet there are those who hold an enviable key to a calling in life—a point in the stars to gravitate toward that in some ways can be even spiritual in nature. I see this in my students who come to my school—day in and day out they show the brave and wonderful calling of bringing the divine spark to the world so that it may feel just a bit more hopeful and a bit more soothed at being in this incredibly beautiful, yet scary bit of rock spinning at a mind-boggling speed in the middle of space. I have several friends who have music, visual art, or creative writing at their centerpoint—called to bring something new into the world that hasn’t been here before. Then there are friends who have gone on to be nurses, psychologists, and medical doctors—both allopathic and alternative. And then there are those who have children—choosing to feel a pull toward the nurturing center of mother- and fatherhood. These are examples of purpose. At times, I think purpose is a luxury, as much as it is often felt to be a necessity—yet without these courageous souls engaging in these activities, human life would be decidedly worse-off.

For myself, I feel stripped of the luxury in many respects. I have transformed my “disabilities” and “losses” into missions and positive events. In some ways, critical events such as my school, which I recognize places such a central role at fostering individuals to bring to bear on the world around them their purpose. And its effects are global in nature. I have students from around the world seeking to learn a range of intellectual and spiritual paths. And that is and will always be an important and lasting legacy I will leave the world when my time here is done. But something is still missing for me.

But it does not make me sad. It makes me search. The boundaries of my life have delimited my purpose. There are a host of “I can’ts” and that is okay. This makes the mystery of what is Katie to do with her life—that is deep inside her veins. This is, I think, an ultimate challenge of self-knowledge; of answering the eternal question of Who am I? Only for me this question is more of Who am I if I am not…? The world of human culture has paths that we are to tread. There is the path of the psychologist and he or she does XYZ. The artist walks down a less defined path, but a path of ABC nevertheless. But if all of these paths are overgrown then I must tread down, to quote Robert Frost, the road “less travelled by”.

For enjoyment, Robert Frost’s “The Road Not Taken”

Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;

Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,

And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back.

I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference.

Can Someone Tell Me Where I Put my Purpose?

This week has been a tough week and it’s only Wednesday.

Life comes with stressors—things like flat tires, which I experienced over the weekend. It also comes with arguments, which I also had on the weekend with my significant other. And life comes with a total lack of knowing what the heck your purpose should be. And illness has a sneaky way of making knowing your purpose or the color of your parachute to quote the famous career counseling book, even that much more impossible because you are so limited.

Before I became disabled, I was a budding psychotherapist. I had a great job that I loved working as a Dual-Diagnosis program manager—in short I ran a treatment program for men and women suffering from mental illness and addictions. And not a day went by that I didn’t feel I was where I needed to be. I thought this was where God had intended to put me. I was certain of it. Even today, my pain specialist and I talk about the current challenges in the field and he says that I have an obvious love for the population and an expertise. But I can’t work in the field. I can’t get a license where I live because I have epilepsy and have and continue to suffer from strokes.

So... out the window went my job.

Before that I was a playwright. And I was good. I won awards and had my play produced. I went to musical theater workshops at ASCAP in New York and knew a lot of people on Broadway. And then it all went silent. No more stories in my head wanting to be told on stage. No more job in theater. Nothing. And I wasn’t even sick then. My then purpose just stopped, ceased to be, nadda, nothing, zilch.

Oh and I was a professional pianist and singer, but my strokes took that away too.

When I was left with nothing. The only thing I had were college degrees that felt more like very expensive pieces of paper zip-tied to a huge debt. And I had a computer, Internet access, and a bed. So sitting on my bed with a Dummies Guide for HTML coding, I created a graduate school in interreligious studies. It started off with 5 people just after I became totally disabled and has grown to a full-fledged university with hundreds of students in undergraduate and graduate studies—most of who study for free and the rest pay a small—I mean really small fee because I needed help paying for the online services. But it is not my purpose. It is my mission: to make higher education accessible and affordable to people like me: sick or poor. And to put social justice or care of the environment as a universal part of education. Again, not my purpose.

Now this begs the question of what is a purpose. Most would say my college sounds like a purpose, but it doesn’t feel like it. My students would likely tell you what they are studying is their purpose; particularly my religious students who are called to study their faiths and to be leaders in their faith. They have perhaps a mission AND a purpose. But I still feel purposeless.

My illness has created a challenge of tight limits. So the question becomes how do you find out your calling when so many doors are closed? This is the challenge of living with a chronic illness—your body places limits on you that you have to start thinking creatively to feel you still have something to work for.

The Side Effect of Solitude

I was supposed to see a friend today, but woke up this morning feeling overly tired. This was not a good sign. I walked my dogs and got more tired. A worsening sign. So I did the only thing I know how to do to cope with the horrible fatigue. I went back to sleep. When I woke up at noon, I hadn’t recovered my energy. Then came the heat on my face as a rash started to spread cheek-to-cheek. Then came a headache and joint pain. And the time drew closer to when I would have to leave to see my friend and pain medication did more to make me tired than reduce pain, I knew I would have to cancel.

Cancelling visits is par for the course with my illnesses. I’m always having to cancel some activity because of ongoing symptoms. When we think of chronic disease, we typically think of chronic symptoms, but there is more than that. There are social impacts and for me that has been loss of a marriage, loss of friendships and for those I retain as friends, the one thing they’ve come to know well is my absence.

It’s been that way for almost 20 years now, since I first became sick. Relationships are hard work and one of the things you need to be able to do so they are successful is show up. And it’s something that these illnesses of Lupus, Ankylosing Spondylitis, Sjogrens, Antiphospholipid Syndrome, Epilepsy, etc., make it impossible to guarantee. There are more times than not that I simply can’t show up. Illnesses are lonely bedfellows.

Borderlands

Borderlands are perilous places where you are neither here nor there. You have no tangible grounding and may not even fit on one side or the other. We often think of borderlands in terms of ethnicity; of great barrier walls rising up between nations to define who fits and who does not. These are structurally violent borderlands—by this I mean they are landscapes where governments or groups of people create social structures to deny human rights to another group. And eventually, these hot spots of structural violence lead to actual violence as individuals rage for their justifiable human freedoms. Yet what is this doing in a blog about illness?

Well, there are borderlands in medicine—created structures that allow certain status quos to remain in place that are harmful. For example, two individuals are seen at an ER for chest pain. One has pain in the heart region and radiating down the left arm; the other has pain in the back and just where the stomach is. The first patient is male and the second patient is female. The male patient is identified as having a heart attack and treated quickly. He survives. The female patient is diagnosed with epigastric pain likely due to stomach-related issues; she dies. The problem: men and women present differently when it comes to heart attacks, but research, until recently, only studied men leaving women stuck at the borderland or flung over the wall with an entirely incorrect diagnosis based on nothing more than hunches and stereotypes.

Borderlands pop up all over medicine. Sometimes they are as simple as appearing in labwork, where your bloodwork skirts the edge of normal, indicating something violent is brewing but it is ignored by physicians as being spurious, incidental, mistaken. Borderlands appear when doctors are unsure as to what is going wrong in your body and when pressed for an answer, physical illness is denied in favor of very rare, rare psychiatric conditions. If you do not fall on this side of the wall, you must be on that side—one side are physical illnesses and on the other are psychiatric illnesses, as if the latter has no biological basis for its occurrence. And your bloodwork is the fence that divides the two. The danger is obvious—a wrong medical diagnosis leads to improper treatment, at best. At worse, death.

I’ve sat on those borderland fences many times. Every time I have to talk to a doctor about a new symptom, I am right back at that fence. That is how I feel heading into my neurology appointment next week. I am already worried about it, despite the fact I have known my neurologist for 10 years now. Is there a medical cause for failing muscles or is it simply “all in my head”.

When the Machine Thinks You’re Dead

Today I had Pulmonary Function Tests (PFTs) as part of my sleep-study evaluations. I’ve had them before. If you’re an asthmatic, you’ve had them plenty of times over the course of your life. Even my nephew when he was 5 was having them done due to his asthma. What made today quite out of the ordinary from my prior studies years ago is the machine essentially didn’t “see” me. I have begun to breathe so shallowly and slowly that I was invisible to the machine, effectively dead. If it were a heart monitor it would be flat-lining. It’s not quite a surprise that the machine didn’t pick up my breathing, both my current significant other and my ex-husband have both commented that they check on me at night as they can’t see my chest rise or fall. In short, they think I’m dead until I do my characteristic breath-in-like-I’ve-just-had-a-gag-removed yawn. The respiratory therapist was monetarily baffled by the event and looked at me and then back at the machine. She adjusted a few things then had to guide me to breathe properly. Who would have thought there is a proper way to breathe and that I had been doing it wrong all these years. I have to admit that how she had me breathing felt too fast and too deep. I thought I was going to pass out with the amount of muscle-movement required to sustain the breathing. And I’m not foreign to deep breathing. I was a professional singer at one point. But that was a long time ago now. And part of the reason I’m not is precisely this reason. My muscles simply do not support deep and normal breathing. They weaken, I get tired, I yawn in an attempt to get oxygen in. then I go back to shallow breathing.

This is one of those anomalies that still define my illness. I have diagnoses, but they don’t fully explain all the small idiosyncrasies that happen. The small stutters of physical function that just aren’t normal, but have no specific identifier associated with them yet. I used to be all idiosyncratic. A sign here; a sign there—here a symptom, there a symptom, Old McDowell on a farm ei ei o. But now most things fall into a diagnostic category, nice and neat. Except my breathing here. And my leg muscles a few months ago.

In April, I think, my memory has my many hospitalizations all run together this past year, I was hospitalized initially on suspicion of a stroke. I knew it wasn’t one, but because my clot risks are so severe and my cardiologist was the one who sent me in (I was diaphoretic, weak, pale, cold and looking sickly) they were cautious. What happened was simple. I gradually lost functioning of my limbs, mostly the legs. I couldn’t lift them. My muscles just went on me. My breathing isn’t different. All my muscles give out on me after a relatively short period of time of using them past exertion point. Walking around the block is almost impossible to do now. It’s a good day when I can get four houses down and four houses back from mine. I’m best after prednisone. I can walk longer, breathe better. But once that starts to wear off I’m back to feeling like ever stair is a gargantuan task that there’s no way on earth I can achieve it. And I have about twenty-stairs into my place. Ouch. This year it’s been worse than ever. And I can’t explain it. Once again I have a symptom that I just don’t know how to explain without it being dismissed as “all in my head” (used in the sarcastic, gender-specific, dismissive way) or simply responded to with a shrug of “I don’t know”.

This brings back an issue that I wrote about a lot in my first blog: The challenge of being taken seriously when you are a woman and/or when you have unusual symptoms. If you don’t fit the mold, most doctors don’t respond like House and start launching an investigation into your weird symptoms with fascination and clinical Sherlockian skill. Most determine quite quickly that you are doing one or more of the following:

1. Taking a deep-seated or not-so deep-seated problem and “converting” it through the amazing power of the unconscious brain into a physical symptom, known as a Conversion Disorder; this is especially true if it is neurological symptoms; if it’s generalized bodily symptoms it is known as a “Somatoform Disorder”—oh the pesky unconscious brain!


2. You think something is wrong with you but nothing really is, hypochondriasis


3. Finally, you have things wrong with you but have become preoccupied with them. The new DSM had to stay relevant somehow when more and more research fails to prove the first one on this list to be true. So now you’re nuts if you worry about what is actually wrong with you.

So the weak muscles have thrown me into the viper pit, so to speak, of having to talk with doctors about an unexplained phenomena that is getting worse not better. And the first doctor I have to talk with is my neurologist. She’s a great doctor, but I came to her when I was already diagnosed with neurological issues: epilepsy, strokes… all well documented. Now I have to enlist her help to think outside the box of “nothing is really wrong with you.”

And perhaps nothing is. Maybe it’s the breathing machine that has a problem.

Day by Day

It’s a bad day today. What I mean about that is it’s a flare-up day. I enjoyed the sun too long on the day of the eclipse and it’s catching up with me. Lupus should have been named after a vampire the way we react to the sun: rashes, fatigue, full flare-ups. Sun screen doesn’t even help most of the time. So how do I feel today other than the generic “crap”.

When I have one of these brief flare-ups it takes about two days to get going. The first day starts with some minor aches and pains. Nothing that I can’t handle. I managed to push through, go food shopping and lug all my groceries upstairs. But today, today is one of those days I hate. I’m falling asleep in mid-conversation. Getting out of bed feels like too much work. Even typing this feels like too much effort, but I wanted to write exactly what happens as it’s happening. What does Lupus feel like…

1. So little energy that lifting limbs feels like you are lifting 100lb weights. Your very breathing is tired and shallow. And it feels like you just don’t get enough air in to your lungs to sustain yourself, so you yawn—a natural gasp for air. Muscles simply don’t work the way they should—they burn, they weaken, they sleep. And when they sleep, you sleep. 2. I eat whatever sweets I find. As if my body is trying desperately to find something to wake itself up. But of course such an instinct does nothing but make me fatter than I already am. So I try to fight it and just drink water. 3. Then comes the joint pain. It starts off subtle at first. An ache here and there. Yesterday it was stiffness in my toes, then gradually my feet. By bedtime, my feet had become so painful, I couldn’t rest them on the bed. Today it’s the feet, hips, and back. Even the fingers hurt. I’ll be rubbing Voltaran gel on them.

What happens when this all occurs: Nothing. Therein lies the problem. When I get hit with these flare-ups all I can do is sleep. Showering becomes work and the idea I have to go out today to the pharmacy is overwhelming.

Disease isn’t just a word and a constellation of symptoms. It’s people. People having to cope day in and day out with symptoms; having to figure out how to negotiate day-to-day activities even while in pain or weakness... When you are on the outside looking in, it’s easy to forget that it’s a constant experience.

Through the Glass Darkly

I don’t talk about this diagnosis often; in fact up until now, only three people know about it. It’s a psychiatric disorder of cognition known as Body Dysmorphic Disorder. In BDD, your brain distorts how you view your body. Rather than looking at yourself as you are, BDD forces you to see your body in the most negative ways possible. It’s not talked about often in the landscape of psychiatry, part of this is due to the patients themselves who experience enormous shame.

The body is a shame-inducing aspect of life on Earth, isn’t it? After all, we turn red when we fart; we have euphemisms for bowel movements and urinating. We have a host of names we us to call our genitalia, some cute, some offensive. We embody the moment when Adam and Eve suddenly knew their shame. BDD takes shame to a whole new level that a fig leaf just can’t cover up.

In BDD, your brain gets stuck on a part of your body and spends minutes to hours to days ripping shreds into your sense of self for the perceived imperfections that part of the body has. And god forbid, you actually have a flaw in the area—then there is no end to the vitriolic whispers that seep into you as your brain thinks. And because it emanates from your brain, it is with you all the time. Every waking moment your sense of self is slowly eroded until all you want to do is hide in a closet until the world ends, which you pray is sooner rather than later.

It’s a painful disorder. I’m not sure if it translates into physical pain and contributes to my illness. I would think not since I’ve had BDD since I was around 10 and my physical pain started in adulthood. But it does cause excruciating psychic pain; this is because during the day and night, your inner voice tells you repeatedly all the things that are wrong with your body in the most abusive language possible. The voice is laden with cruelty.

For me, this inner demon has a range of commentary. If I catch a glimpse of myself in the mirror, I get stuck staring. Like Narcissus staring at his beauty in the glassy lake, I stare at what is ugly in the smudged mirror. What I look at can be my skin, the small droop to one eye, the unevenness of my face, the flatness at the back of my skull that gives a rectangular view to my profile, or the thin smear of facial hair under my chin (this I focus the most on, so much so I resist hugging my significant other lest he fee any prickliness on his skin and begins to think “ew how gross”. And that’s just the face, so I avoid mirrors as much as possible. If I don’t have the visual input I can get away with not thinking about my features, except the hair on my face. I know intellectually, that what I find imperfect is actually normal and if I see it on someone else I don’t think the person is ugly. But it makes no difference to my brain because it means I am not attractive.

Then comes the body. I have always been at war with my body, ever sense I was a child. My body was the landscape where insults and arguments with my mother, my grandmother, my peers were launched. My body was the landscape of violent abuse and repeated rape all by the time I was sixteen. It was a body that I wished to be gone from. But it was one I was stuck with and my brain never let me forget this.

By the time I was five, my hair was a battle zone between my mother and I. She wanted it long and silky. I wanted it short and less tangled. Night after night, I cried as she attempted to detangle my hair with sprays and water and special shampoos to get it the right consistency. Finally, I took scissors and cut the bangs, right before picture day. My mother was horrified, but I felt a small victory and soon learned that scissors and my hair was one thing I had control over. And I got my short hair.

But I still wasn’t “Ladylike” enough according to my maternal grandmother. My feet were too big, like blocks, nothing compared to my mother’s dainty feet she paraded and wiggled in front of me. My feet were too big—to big blocks of marble that a sculptor failed to finish correctly. And I never wore lipstick and a “lady does not leave the house without lipstick on”—I was allergic. But most of all, my boobs were too big and uneven. Most humiliating of all, I “didn’t look the way I was supposed to”.

My BDD coupled with the reinforcing statements of my mother led to a drastic measure of breast reduction surgery. It was so bad that when I met with the plastic surgeon I told him to cut my breasts entirely off. Instead, I endured the humiliating process of him telling me in great detail how my breasts were poorly made. The nipples hung too low, the breasts too pendulum like, not perky. “So we just move the nipples up to the center, take all this extra fat out”—sharpie marker tattooed my wrong boobs. Years later I would learn my breasts had been fine, the exact shape to nurse an infant. Nipples are supposed to be down so babies can feed more easily. Who would have guessed that nature and God actually designed something more perfect than what man could come up with. But now I looked like a Porn Star—bright perky boobs, with scars however. I was promised no scars. I had something to explain to every boyfriend and something else to focus on. But according to my mother, “You look just as you should have looked.” My body was temporarily right.

But not for long…damage was done. For the next 23 years, I would slowly erode what self-esteem I had to become someone who was afraid of being seen in public. Self-conscious that all my disfigurement would be noticed. I gave up careers, failed at relationships, and avoided restaurants like the plague. And of course it didn’t help that my body failed me entirely and became riddled with a disease. And the one side effect I prayed would never happen, happened. I gained and gained and kept on gaining weight.

I had been thin most of my life. Big boobed, but thin. I didn’t have to hear “you’re too fat”, instead I heard things like “she’s big on top and has a long waist to her crotch” when my mother took me to fit me for an 8th-grade prom dress. But I never heard, “she’s fat.” Until years of corticosteroids, antidepressants, and antiepileptic medication turned me into a round apple of a woman. And my BDD went into overdrive. All mirrors had to be avoided, all pictures shredded. I was horrified when a picture of me ended up on facebook from a family trip to Medieval Times and I stared and stared at the picture in sheer horror.

I’m lucky, however, it appears my Nudexta is a wonder drug for BDD, although no research has ever studied it with BDD. So my symptoms are not so bad most days now, but recently they have been creeping in again and I find myself staring at the mirror, ready to fall like Alice Through the Glass Darkly

Pills, Pills, Pills!

Let’s go over my med list for pure ^&*ts and giggles!! It’s a colorful array of pills, capsules, inhalers, sprays… lots of fun!! Let’s get started!

Alfuzosin: this lovely pill is so I can urinate more easily, without it I sit on the toilet and start humming muzak to kill time and entertain any individual in the bathroom with me if I’m out and about in the world. I do hum well.

Dexilant: this bright-blue capsule helps reduce the risk of pneumonia from stomach acid zipping up my esophagus.

Reglan: four times a day I swallow this white, chalky pill so that I can actually swallow and move food down and out my stomach, all the while keeping it in. You see I have what appears to be progressive paralysis of my esophagus and stomach.

Linzess: every morning this delicate, white capsule stickily slips down my throat to help my intestines cope with their growing paralysis.

Metformin: this is a hellacious, monster tablet I was put on after the scales of corticosteroid use tipped against my favor and started to cause blood sugar problems.

Aquoral: With sjogrens drying out my body from the inside out, I’ve recently needed a prescription spray for my mouth so that I have saliva.

Pilocarpine: Four times a day this tiny pill causes me to sweat like a little piggy in the hot, summer sun (if in fact pigs sweat) just so I can have saliva in my mouth.

Cimzia: the ouch medication. This is a shot I give myself every two weeks in my belly. And it hurts, all so that my spine can stop fusing together

Methotrexate: this is my weekly injection of low-dose chemotherapy designed to help not only keep my Ankylosing Spondylitis, but my Lupus under control. So far I haven’t lost too much hair, but I’ve learned I can’t color my hair. But that’s okay, I always wanted to see how my hair would eventually look gray!

Plaquenil: The staple of all rheumatological medications for Lupus and the wonderful array of other diseases.

Vicodin: This year saw my pain become intolerable. It was a bad year; a very bad year for me from strokes, heart attack, to a dissected artery, pain because more extreme than what I was used too. But so far not a medication I have to take on a daily basis.

Coumadin: discovered as an effective rat poison, this is the wonderful three and a half, purple pills I take every day in the hopes I don’t have an infarction in yet another organ. So far I’m making progress checking off each organ: brain (12 TIAs, 3 strokes), Large Intestine, Kidney, Lung, a small heart attack, and likely my left vertebral artery that clotted and tore.

Lovenox: another shot for when my Coumadin doesn’t work effectively enough.

Cymbalta: As most individuals with severe chronic illness, I suffer from depression, this wonderful med has the dual purpose of being a good antidepressant and an even better medication for nerve pain!

Ativan: Anxiety is a major problem that needs to be nipped in the bud as quickly as possible precisely because anxiety and depression together can wreak havoc with the body, increasing pain perception and placing you at risk for worsening diseases due to stress and biochemical changes.

Nudexta: I have a rare disorder known as pseudobulbar. It’s where your brain responds to social situations with the incorrect or opposite emotional responses. It makes it confusing to those you are engaging with when it’s not managed and managing it generally requires medication as it’s precisely due to brain damage.

Silenor: I can’t sleep some days.

Gabapentin: Strokes cause a challenge of lifelong problems when you survive them. There is always damage. Even when the person doesn’t look like they suffered damage, they have, you just have to dig deeper. For me, one source of damage is epilepsy, so I take five of these capsules a day.

Lamictal: four pills a day, I take this med to further help with the progressive form of epilepsy I was diagnosed with.

Oxcarbazepine: this orange pill is also for epilepsy.

For allergies, allergies, allergies Oh My! I take: Zyrtec, sniff Flonase, inhale Advair HFA and on bad days, Ventolin, and Duo-Neb

I’ve suffered from high blood pressure since I was 18, but after my heart attack this past year, my heart has gone into AFib and looks “sluggish” on heart monitoris. As such, they added Metoprolol to my Lisinopril. So these pink pills help the heart beat fine.

Elephantine Nose

So about 6 weeks ago I was diagnosed with sleep apnea, which may partly explain my somnolence during the day. I mastered the art of falling asleep in the middle of conversations, driving, phone calls. One friend I hadn’t spoken to in a while had the pleasure of silence on the other end of the line as I conked out like someone who drank way, way too much liquor. My significant other tells me he loves me and that I don’t annoy him most of the time, (nice right? sheesh). What annoys him is when I fall asleep in mid conversation or watching a movie. He’s even so nice as to film me while I gently and ever-so delicately snore. The reason he hates it so much: he gets bored without me awake, alert, and listening. Ladies, men like to talk—and they like to talk a lot. Contrary to all the ideas that they don’t like to share, take it from me having run group therapy for men and my own romantic life as a perpetual listener—they love to talk. And have a lot to say that can be interesting, most of the time. But I digress. So back to the wonderful world of sleep disorders…

So sleep apnea could explain some of the day-time sleepiness. Anemia also had a hand in it (IV iron treatments helped immensely with that). But the biggest culprit is my autoimmune diseases. They are the gift that keeps on giving and giving and giving. I have days where I’m so tired walking feels like I’m lugging stones around and that’s not because I’m overweight, thank you very much. I used to describe the feeling as walking through glue or some other sticky substance that is clinging to my legs. Stairs are my dreaded archenemy. And we have lots of stairs and dogs and thus lots of climbing and walk requirements. Sometimes it’s so bad that rolling my belly out of bed takes more effort than I want. And mind you, yes I’m chubby but I’m not Santa Clause, not yet at least. But if they keep putting me on Prednisone, I may end up shimmying down your chimneys at Christmas.

Lupus, Ankylosing Spondylitis, Sjogrens, and all the other lovely autoimmune diseases poop you out. Just saying the full names of all of them poops one out. Part of this is the chronicity of pain. My pain specialist is the best and he always makes sure to remind patients, pain is a pain in the ass but it won’t kill you even when you feel like it is. Pain is a symptom, so is fatigue. Neither one is fatal or serious until you give up being responsible for the proper treatment of them. Yes I just slipped in a short and fast lecture! But seriously, it’s true. I realized that by not treating my fatigue and letting it go on had consequences that were in fact threatening to my well-being. Relationship issues—who wants to being romantically involved with someone who just falls asleep on you. Transportation issues—who wants to meet my car face-to-face rather than me, I ask? These symptoms aren’t life-threatening. They’re not the symptoms like blood clots, heart inflammation, kidney failure. These are the overt, overwhelming symptoms that can really mess things up around you. Car accident, pain medication addiction, you get my drift.

So where am I in my sleep treatment you might ask? Well for starters, it all required another corticosteroid shot, yes that weight-gaining medication. Fatigue and pain are all symptoms of an active disease—the only way to treat the diseases is to turn off the immune system. That was step one. Step two was getting a CPAP machine. The dreaded machine that makes you feel like to can’t breathe every time you open your mouth and air is suddenly forced up your nose.

This machine has improved my daytime fatigue, but man is it uncomfortable and awkward. It straps around my head, pinching my face into some sort of raisinesque wrinkles, all the while covering my nose with a long tube attached to it going to the whirring machine. I end up looking like a strange elephant. And forget about wearing glasses with it so you can read your Kindle at night for my now sleepless nights. The nose piece is so big on me it goes into the corner of my eyes and that’s a SMALL mask!!

Did you miss it? My little disclosure? Yes friends! I have subsequently developed insomnia. So needless to say, I am awake now—but most of that is when everyone else is asleep.

Even Doctors Have Money-Making Schemes

In all businesses there are, to be blunt, the schemes to make money. Strategies to increase profits and these strategies are always at the expense of the consumer. When we think of the medical profession, we typically forget that we are consumers and doctors run businesses. When we see doctors, we are singularly focused on feeling better and less focused on the doctor’s profits or bottom line. If we have good insurance paid for by our work, we typically stop thinking about the cost of medical care all together as it is almost invisible to us. We may only encounter the business end of our medical care with a co-pay of some type. Then we forget. If you have a chronic illness, you are seeing so many doctors at any given time, you can’t help but notice the money changing hands. Usually it’s happening so much, it’s an unavoidable aspect of our medical care. And in many instances, particularly if you have Medicare and no supplement (if you are like me, you are too young to have a quality supplement and the ones that are available are too costly), you are paying bills after the appointment for what was unpaid by medical insurance. But there is another way doctors manage to wrangle a few more dollars from you and in such a way as to play on the idea, not the fact, that they actually care about you personally and know you well. (While most of my doctors I’ve seen for years, know me very well, most of my other specialists know me only by face, not by name.) This seemingly innocent strategy is denying refills of your medication.

Today, I made one of my many trips to my pharmacy--they do know me by name and even know my birthdate now, despite being a big chain. I was told that one of my doctors who prescribes my Alfuzosin denied the refill without an appointment. So at first thought, you might say: sure that’s good medical practice; he or she wants to make sure you are doing okay on the medicine. The problem with this as the first thought is it is a surefire way to losing money. Your first impulse is to call the doctor and make an appointment. You’re willing to pay the copay for the visit to get the medication because the doctor has your best-interest at heart. Sometimes that thought is logical, but only if you are on a new medication and the doctor needs to assess how you are doing; to touch base with you to make sure you are improving and not having side effects. They need this for their records and liability risks, and usually the patient needs this to feel reassured. I’m all for it. But then you become a source of income and it goes something like this:

May 2017 I saw my urologist for a follow-up. Due to the strokes and SLE progression, I have some paralysis of my bladder making urinating hard to do; I take a medication that stimulates bladder contractions so that I can urinate. It’s an important medication. Urine retention can be fatal untreated--it’s just one more of those health issues I have that carry the label “fatal if untreated by medications”. My urologist is good. He’s also a very sardonic kind of guy. When I first met him he said to me I have a medication list like an 80-year-old lady in poor health. He’s one of those doctors who is what I call a WYSIWYG--what you see is what you get, he doesn’t make much attempt at being a doctor. He complains to you about his work, he makes sarcastic comments, he’s upfront about how little time he has with patients, etc. So when I last saw him, he said, “I will see you in 2018, no need to see you sooner.” Why? Because I have to be able to pee. The medication works. I’ve been on it long enough to no longer have major side effects. I’m a stable, boring patient at the moment in his eyes. But here I am unable to fill a medication I need, will run out of sooner than I can get an appointment with an over-booked doctor, when I shouldn’t even have to see… But he works for a larger medical group. And they have their own policy: make money.

So when my pharmacy made their routine call for refills. A receptionist or nurse told them I need to come back in, when the doctor doesn’t need to see me. And in all truth, I don’t have the money to waste on appointments that are medically unnecessary. But I will have to call and make that appointment because Doctors have something no other business holds in their hands: our lives. And so my money will go out the window.

Sleeping Sickness

At one point in my life sleeping was a normal phenomena. I went to bed, dreamed, woke up. Then I had to readjust after my first set of strokes as they left me with epilepsy, specifically epilepsy that mostly occurred while I slept. So sleeping went something like this: go to bed, seize most of the night, wake up. Then I went on medication and sleeping went back to mostly normal. But then this year happened... By February, sleeping went something like this: go to bed, vomit in my sleep, choke, wake up with pneumonitis, visit hospital, sleep in hospital for two weeks. Then rinse and repeat. Over and Over and Over...

Then something new happened... on top of the intermittent choking to death, I developed extreme fatigue that led to sleep upwards of 19 hours a day. Sleeping went something like this: go to bed, wake up choking, go back to sleep, wake up with my anxious dog Ella, go back to sleep, wake up to walk dogs, get so tired standing wasn't an option, go back to sleep. Driving spouse crazy with all the sleeping, be filmed by said spouse with cell phone snoring, get C-pap machine--repeat whole cycle with a nose mask whirring air into my lungs.

And sleeping doesn't remove the fatigue. Sleeping is more of a sudden, uncontrollable moment of being hit with a sedation dart following any type of physical activity that is normal--like walking up stairs. I've been told that Lupus comes with debilitating fatigue, so much so that some patients are prescribed amphetamines, which I've learned Medicare does not go for unless you have narcolepsy, which according to my husband I must have because I fall asleep in mid-conversation. In fact, when I went to see my therapist last, I was falling asleep in the session and I was starting to dream.

It's hard to describe what it's like to have severe fatigue and to sleep as much as I do. Most people I think assume that sleeping is a great thing and that I'm lucky I get to sleep so much. But it's not. It makes getting things done next to impossible. It messes up my relationship--there's nothing more relationship building then falling asleep while your spouse tells you something important. Then there is the over all feeling of, well, sickness that comes with it. I feel sick, diseased, disabled,... that leads to the last thing that gets added to my sleep cycle, depression.

For those of you who don't know depression, one of the key symptoms is, you guessed it... sleeping excessively.

So now my sleep looks something like this:

1. Sleep
2. Reflux stomach acid
3. Choke
4. Air forced into lungs by the whirring C-Pap
5. Sleep
6. Wake up with anxious dog and get annoyed
7. Sleep
8. Wake up and walk dogs and take medicine
9. Get so tired after walking, sleep until noon, maybe 3 pm
10. Wake up, look at clock, get depressed
11. Try not to fall back to sleep
12. Keep trying not to sleep...
13. Keep trying...
14. 11 pm go back to sleep.

I don't have seizures often anymore, so that's at least something.

An Organ with an Identity Crisis

So I have just been released—again for the 5th time—from the hospital. I was admitted last week for respiratory distress induced by stomach acid. Clinically known as chemical pneumonitis—that’s a mouthful. This is the second hospitalization for this in two months. And its all because I have a paralyzed sphincter between my stomach and esophagus so what goes down, always comes back up. And you add to this gastroparesis (paralysis of the stomach itself—there’s always a lot to come back up. Oh, and I have a large hiatal hernia that I’ve had since birth. And my esophagus has patches where it’s also paralyzed—they call all of this “motility issues”. And no one can fix this locally so I now have to take my ass to Temple University to see “motility experts” and then I may be able to get surgery to fix the situation that is progressive in my case because of the Lupus and the Sjogrens diseases. Joy.

And on top of this, I don’t sleep. Not a wink at night now and I’m a narcoleptic in the day. Supposedly this may be due to the wonderful collision of Lupus fatigue meets elevated Prolactin, when boobs meet the wolfy disease!

I know some of you out there are probably thinking how wonderful it would be to sleep all day, what a luxery. Trust me it’s not. The world operates on a proper sleep-wake cycle and so things are open during the day and close down to sleep at night. Being up offers the sole advantage of going to Walgreens to purchase impulse items, forgotten medications and emergency toilet paper. Of course Walmart is an option as well, one I almost did last night while awake.

But instead I did the kitty litter. Amidst howling and whimpering dogs who decided the great thunder clouds above had it specifically in for them. Sleeping is also not possible when three dogs are carrying on like death is imminent. Specifically when one is monster-truck size dog who sounds like thunder when she barks. But my cats are happy and slightly less smelly. What I should have down though was the wash.

When I was in college being awake was cool. And typically led to late night conversations about the nature of existence in the way only college kids talk about it—as if they somehow knew everything. There’s always a sense of snobbery about the college kid—a know-it-allness that sees life ahead as a challenge easily conquered because they are the next big thing, the one who will “get it”. Of course, life squishes this idea rather quickly upon graduating if not sooner. Insomnia is one way to squish the juice out of hubris.

But it’s all part and parcel of Systemic Lupus Erythematosus (SLE) and the wonderful other diseases that have come with it: Ankylosing Spondylitis (AS), Sjogrens (Sj), Antiphospholipid Syndrome (APS), Renaud’s Syndrome. And the names only hint at just how profoundly complicated the intermixing of the diseases are. First, they are barely pronounceable. When you have diseases that are next to impossible to pronounce, you know you are in trouble because the next thing you know you are faced with is unpronounceable medications…certolizumab pegol, methotrexate, hydroxchlorquine… that always creates for human in the hospital as nurses attempt pronunciations for the first time. Because I’m on 28 medications, it’s a lot of stumbling around words like alfuzosin, words they never hear and it usually leads to a great deal of laughter come the many times of day I take my medications. But seriously though, it sucks. Not the pill taking, you do what you have to do, but the symptoms that still exist even after 28 pills later. I have progressive forms of the disease, my body is not responding to great to everything—medications have slowed the diseases but they are marching along and stomping like Godzilla on a model-size Japan recreation that is my body. ROAR…. Stomp stomp stomp…

And right now I am miserable with a lousy stomach that can barely keep in the proper organ (it keeps rejecting food and UPSing it my lungs). My stomach is having an identity crisis I think and it has decided it wants to be my lungs and the lungs should be the stomach. And added to this my sleeping problems and I feel a slow descent into insanity. Thankfully I have three crazy dogs and three awesome cats and a fascinating, funny Raggedy Andy boyfriend to keep me grounded. The other day he and I had a “we got this” conversation of we handled another hospitalization with grace. He’s adapted officially to the upheaval that is Autoimmune Diseases. At least for now.

Now if only my stomach would stop having an identity crisis and start digesting food, I’d probably sleep. I don’t sleep in part because I keep choking on stomach acid and undigested food that my stomach rejects the moment I lay down.

Help! My Boobs Are Acting Up!

So I’m just going to jump right back into my life as an ongoing medical nightmare. Three months ago I was required to start taking a great little medication called Reglan four times a day to help cope with the fact my stomach sphincter does not close and so I refluxing stomach acid non-stop AND I can’t get surgery to fix it because I’m too high-risk due to my clotting disorder (12 TIAs, 4 strokes, and a dissected artery to my brain no one wants to surgically touch me). However, it appears that my wonderful Reglan has decided to tell my pituitary gland that I’ve just GIVEN BIRTH AND AM NURSING!!! When Boobs and Glands go bad!!!!! If I had a baby than elevated prolactin would be fine, great even! I’d be a milk-producing Mama! (Ok, not great in my case just because I could never breastfeed without poisoning a baby with the 28 pills I take daily, most twice to three times a day).

So I don’t have a baby, but what I do have is non-stop sweating, constant sleepiness followed by sleeplessness when I’m meant to sleep, agitation, stomach problems, and an overall feeling of wanting to die now. Seriously, I never thought I could feel more miserable than I do on a daily basis with Lupus. But alas the human body can go insane in even MORE ways! Yay!.

This morning while wrestling with an GI virus (no explanation of symptoms needed here), my prolactin levels added profuse fatigue and sweating. I laid down on my bed with my dogs and didn’t move. All I could think was I didn’t want to be alive if I had to live like this. My ex-husband called me up and I told him that I thought I’d have to take myself to the hospital I felt so awful. I can’t even begin to describe how awful I felt in those moments lying on the bed unmoving. It was like every ounce of life was sweating out of me and I thought, I’m never going to feel better. And when you get chronically ill you have these moments of extreme hopelessness when you feel like you’ve been run over by an 18-wheeler and then backed up on. They are moments when you feel like your illness has worsened permanently and you don’t know if you’re going to be able to cope with it.

I’ve struggled with depression for the first time in my years of illness, nearly 20 years now. I used to get through it with the perspective of I can cope. My mantra was “I think I can” of the Little Engine That Could. It’s been my mantra to cope with all my daily worries since I was a kid. I believed I could cope with everything. Nothing was past my capacity. This year starting with Christmas day of 2016 I learned I have end points. Now I’m at the end of what I can adjust too at the moment, I’m sure if things stay stable I’ll get used to things again. But 5 hospitalizations, another stroke, 2 TIAs, paralyzed GI system, a mild heart attack, and a dissected artery—and now this prolactin, ugh. I’m at an end point.

This morning I thought I had passed it. And with that Chasing Zebras: The Reboot is born.