For my daughter; for my husband; for myself. (And, I guess, for my doctors.)

My doctor suggested I write my journey down. It’s been a long one. With vertigo, and chronic joint pain, muscle pain, lightheadedness, fatigue – but these things, these things I can live with. It’s the unknown that makes me feel as though I am dying.

And I know that sounds dramatic. But trust me, I’m not being dramatic. Every time this pain hits, I believe I am dying, that something has invaded my system, and we need to find it because I need to watch my baby grow. I need to be there to guide her. Love her. Hold her.

It began in January. January 10th. The tips of my fingers, mostly my right hand, would get “triggered”. What does that mean? It feels like this: the pain you get when you slam your fingernail in a car door and then push on the tip, letting all that bruised, pulsing blood pool – inflamed, trapped. So my fingernails would be throbbing, swollen, and hot – excruciating pain – so much pain that my blood pressure was Stage 2 Hypertensive. And then, the tips of my fingers, the skin, would itch. Like, tweeker itch.

Weird. I know. Terrifying.

Because, listen – I need to hold my baby. I need to change her diaper and feed her and get her dressed and use my freaking hands, my fingers. For real.

I went to a hand specialist who ordered a nerve test to rule out carpel tunnel.

In the meantime, my primary care referred me to a rheumatologist, believing that it was autoimmune related, specifically Ehler’s Danlos Syndrome.

Sure enough, rheumatologist confirmed Hypermobility Ehler’s Danlos Syndrome – so that explains the chronic fatigue, and muscle and joint pain, and it explains why my thumbs dislocated during and after pregnancy, and my SI joint slipped, my pubic bone separated, and my pelvis slipped (Yay!), but she said that it doesn’t explain the finger pain. It’s unrelated.

The scary thing is, there are 6 subcategories of Ehler’s. One is Vascular Ehler’s, which has a shortened life expectancy. After the nerve study showed no carpel tunnel, my primary care feared that I had Vascular Ehler’s and ordered a vascular study.

Now, I’m a brand new mom. And I’m being told I might not watch my baby grow and be a grandmother to her babies. So, yeah, my husband and I had to deal with that fear. It’s been a rough road. But good news…vascular study is normal.

OK.

So, we’ve had a nerve study and a vascular study – we do a neck MRI, and a cardiac MRI (with HEDS, there is a risk that my valve or something would be faulty). All come back normal.

I see a hand specialist, primary care, rheumatology, cardiology, and neurology. Each of them tells me that it’s SOMETHING. It isn’t stress. But they just don’t know what it is. I’m told to go home. Call it. And hope the pain doesn’t come back.

This was a span of a few months. Months where I carted Scarlett around to doctor after doctor, telling myself that I was teaching her self-care at a young age, to be your own advocate.

It’s hard enough being a new mother, let alone handling incredible pain, and handling the fear of the unknown.

So I called it. Played pretend. You see, the pain comes and goes as it pleases. I’ve tried to track it to see if there is something that “triggers” the trigger. Sometimes I’ll go weeks with no pain in the fingertips. And then – BAM!

So I had a good stretch.

June 19th. It’s back. In full force. Right ring finger. It’s mostly always the Right ring finger. My new doctor runs tests for infectious diseases such as Lyme’s. She tells me she’s astounded that I’m not on pain meds. (They’ve been prescribed, I just refuse.) So she put me on a pain medicine that is used to treat autoimmune, chronic pain. It’s not an opiate. It’s what alcoholics take to stop drinking. And it works. It dulls the pain. I can still feel the finger triggered, but it’s not the searing, excruciating heat that it was before.

Until today.

Today that finger is angry. And it’s moved to the pinky finger on my right hand as well. And I spent the day today thinking that I am dying. Trying not to focus on the pain. Trying to focus on my beautiful little girl. Cringing each time I picked her up or changed her diaper, had to snap up those freaking snaps on her clothes. And it’s not fair. That caring for my child hurts me. It physically hurts me.

Life. Is. Not. Fair.

I had a “friend” (I use quotations because no friend would ever say what she said), respond to my pregnancy news with something along the lines of….”I don’t know what you want me to say…you’re very sick.” But guess what? That little girl is the best thing that has ever happened in my life. And I would snap a million fucking buttons (and probably will) and endure any amount of pain I had to, to have her in my presence. She is my light. And my pain doesn’t make me less of a mother. I’m an incredible mother.

(I’ve been waiting to say this, to get this out, so moving on.)

If this is autoimmune related, we need to figure out what it is because Scarlett may inherit it. And it is my responsibility as her mother to find answers. So that means I must keep pushing, and digging, and man, I’m tired.

What I know: my mother shows autoimmune in her blood, but they don’t know which autoimmune disease she has; my blood does not show autoimmune (yet); my body is inflamed, it treats any foreign object as an invader and attacks (breast milk – whoa); the inflammation seems to now be living in the first joint of my fingers; Lyme’s Disease results came back negative, but I tested positive for one of the aggressive Lyme’s titers, igM-P23 ab, which apparently is specific to Lyme’s, but in order to test positive, you have to show presence of two of the three aggressive titers; I had a tick on me all night after hiking in the Bay Area a few years ago; I am suffering.

My question: is it all related somehow – the vertigo, the lightheadedness, the muscle and joint pain, the FINGERS, or are they separate issues?

So.

I have an appointment with an infectious disease specialist. I’m waiting on a referral to a new rheumatologist and a neuromuscular specialist. I’m going to go gluten free and do an anti-inflammatory diet. I’m going to go to a freaking shaman and get cleansed. (Seriously.) I am doing everything freaking possible to figure this thing out.

But pain, my friends, has a way of making you feel small. Like I want to curl into myself. Ashamed that I’m “broken”. That my husband married someone who needs help. That my daughter has a mother who hurts.

But I have to keep telling myself that I am strong. And I am determined. And I have a good support system. And that every day, every second, is a gift.

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What They Don’t Tell You About Breastfeeding; This Shit is HARD.

I almost didn’t buy a pump. I had this silly notion that after such a challenging pregnancy, postpartum would be a breeze, that Scarlett would latch onto my breast, no problem, and suck, suck, suck until her heart’s desire.

This is what I wanted. To breastfeed my baby. But this was not my reality.

My therapist and I are working on accepting reality for what it is instead of trying to change it or mourning for “what could have been”, but I have to tell you, there is something about breastfeeding – this biological need (at least for me) – that insists on a mourning period – grief.

Scarlett was born three weeks early, and when she was born, she was born with low glucose and a low body temperature so they fed her a bottle of formula immediately. I was OK with this. It was necessary. My baby needed glucose, food – a jump-start after her arrival. But this meant that she needed supplementation while breastfeeding – more on that in a bit.

When she was put to my breast, she did latch, and she suck, suck, sucked until her heart’s desire, but I thought – is it supposed to feel like this? My little girl, a vampire on my breast? – more on that in a bit.

I began pumping in the hospital so that we could supplement her feeds with breast-milk instead of formula. The nurse had me pumping at the highest, deepest speed, and it worked – I was producing. So here is what we needed to do: Tino would have to fill a vial with my breast-milk that was connected to a tube, and then he would have to bend over and feed that tube between my nipple and Scarlett’s mouth and we would work to get her to latch to both so that she received the supplementation while still latched onto my breast.

When we got home from the hospital, my nipples were cracked and raw and Tino’s back was on the fritz. We were gearing up for her late night feed when I looked at him and thought – if Tino’s back goes out, we’re screwed (I had a C-Section and was not very mobile), so we called it – we would feed her from a bottle, and feed her my pumped milk until my nipples healed and she no longer needed supplementation.

Well, our little darling had a tongue-tie, which is fairly common in newborns, which made her my little vampire, sucking until my nipples were raw. So…we got her tongue-tie fixed.

Now, friends, my breasts are small – like, really small – and when my milk came in, they were so engorged that I no longer had a nipple. I was also over-producing (the lactation consultant thinks my body became confused when pumping at such a high speed in the hospital, that it believed it needed to feed twins), so when Scarlett’s tongue-tie was fixed, she could no longer latch because I had no nipple to latch to. We tried self-expressing or pumping before a feed to try and get my breasts to soften, but even after fifteen minutes of pumping, there was no softening these hard rocks. So we tried a nipple shield. My little darling would rip that thing off of me and hurl it, or chew on it instead of feed. All the while losing her shit because – she was HUNGRY.

So…pumping and bottle feeding it was. All while still trying to get her to latch. And then I got mastitis.

Fuck mastitis. It is evil. No one talks about this crap. No one spills the beans on how challenging breastfeeding can actually be. And if they do, or have – I missed the memo. Mastitis knocks you on your little behind with a fever and flu-like symptoms. I was put on antibiotics, but after a week, my mastitis still hadn’t cleared. We tried new antibiotics and a few days later, I began to feel better.

So many challenges.

But all of these challenges aren’t what kicked breastfeeding to the curb for me. I was willing to try, to keep working, so that Scarlett could have the best possible start to her life.

Here it is:

Before pregnancy, people called me Gumby. It was a fun party trick – me, turning my hands all of the way around, my elbow bent at an odd angle (it booked me a gig once in a music video in Chicago). On my resume, under “special skills”, I would list: can turn hand all of the way around. But during pregnancy? All of those loose limbs? Add in the relaxin hormone? And I was a puppet on a string with no puppeteer.

In third trimester, the relaxin hit, and my pubic bone felt as though someone was literally pulling it apart. I was diagnosed with SPD – Symphysis Pubis Dysfunction – where you lose stability in your pubic bone. Hello, marionettes! Then, my thumbs began to dislocate. I would pull the blanket over me at night, and, bam!, dislocation of the thumb. I hoped these things would end once I gave birth to Scarlett, but they didn’t.

I would try and manipulate Scarlett to breastfeed and my thumbs would dislocate. I would try and pick her up, but would have no stability in my pelvis, and my thumbs would dislocate. I learned that as long as I was producing milk, I would produce relaxin. So, now came the choice, do I breastfeed my baby (pumping now, as I couldn’t manipulate her to feed with my bunked hands), and continue to have instability in my joints, or do we switch to formula and let my joints stiffen back up. As a family, Tino and I decided to wean Scarlett from breast-milk and transition her to formula.

I understood it was a necessity – to pick up my child without the real fear of dropping her, of my thumbs or my pelvis giving out, but as my milk dried up, I would weep, and weep and weep and weep, for the loss of this biological need in me, of my failure – my body’s failure – to perform in the way in which I wanted it to. I so desperately wanted it to. And as Scarlett switched to formula, and began having gas, and tummy troubles, I would blame myself, this tricky body. I would shame myself – I didn’t try hard enough, let’s try again. And my husband would become furious as I desperately pushed Scarlett to my breast to latch, even though my milk was almost gone, and she latched, and I thought – we can do this! – and then my thumbs would give out.

Breastfeeding was not in the cards for us.

And intellectually I know that a fed baby is best. A loved baby is best. Being able to care for my baby, to pick her up, is best. But still…I grieved (am still grieving) because I wanted this, to breastfeed, and I couldn’t.

When I wasn’t a mother and my friends who were new mothers came to me with their troubles breastfeeding, and their sadness, or frustration at the challenges, I would say to them, “Give yourself a break. You’re doing the best that you can. Take the pressure off of yourself.”

How ignorant I was of their plight.

Now I know.

Breastfeeding is hard. It is painful. It is work. But it is rewarding, to be able to feed your child from your own body. It is wonderful, to feel her connected to you in such an intimate sense. But now I must let it go, move on, release my shame and grief, because none of that helps Scarlett, none of that is good for Scarlett, and this is simply a lesson in parenthood, to let go of the things that we cannot control – to adapt.

It is true: a fed baby is best; a loved baby is best; a cared for baby is best.

And Scarlett is all of these things.

A Rant:

A conversation that I had with a dear friend yesterday evening has me up at 3am unable to sleep, so worked up that I need to vent, to rant, because the ignorance of some is astounding.

This dear friend asked about my pregnancy, but each time I attempted to convey what is happening (even light-heartedly), I was shut down. When I joked that I’ve been cooped up for a while and I’m going batty, I was told not to use that phrase, that the phrase “cooped up” is negative and what we think becomes reality. But the phrase “cooped up”, for me, is an easy, breezy way to express that I’ve been landlocked to my house for quite some time now – first, with the vertigo, and now with a high-risk pregnancy.

Yes, I’ve been cooped up.

I’m not complaining. It’s a challenge, but I’m not complaining.

I expressed the very real, very honest feeling that when I see other women who get pregnant easily and have an easy pregnancy, I’m jealous. I was admonished. Stop with that bullshit, I was told. But that, my friends, is not bullshit. It’s true. Stripped down and bare. I – am – jealous. And I deal with that jealousy. Here’s the thing – we struggled to get pregnant. It was a challenge, a journey, one that made us so very appreciative of this life growing inside of me, but it was a challenge, a painful one, nonetheless. And I realize that our road to pregnancy was not as long and arduous and painful as others, as some of my close friends who are currently on this journey, experiencing the pain of miscarriages, and the pain of fertility issues. To all of those women (and men) – I see you, I hear you, and I have compassion for you. (Shouldn’t we have compassion?) But now that I’m pregnant, I am high risk. So, yes, I’m jealous.

I was then lectured on a “natural” birth, a vaginal birth without drugs. That she always believed that she would have a “natural” birth and so she did, that our thoughts, once again, become reality. This, friends, hit a nerve. A zinging one. Here are the facts: I have complete placenta previa; I must have a C-section. And when I told her this, she pushed – have you gotten a second opinion? A third? Women have been giving birth for years naturally without drugs. Women still do in other parts of the world. Yes – this is true. But guess what? If I were to have a vaginal birth, there is a very real, likely chance that I would bleed out on the table (at the very least I would need several blood transfusions), and my baby girl would be in danger, she would be in distress, and she might not make it either. I am lucky, I am blessed – yes, blessed, to live in a country and in a city where I have access to excellent health care, where I am able to birth a child in the safest way possible considering my condition, where if I have a big bleed and do go into pre-term labor, which is a possibility with previa, that I will have doctors that will likely be able to control that bleed and keep me in the hospital for as long as possible, keeping my baby girl inside of me as long as possible, before taking her by C-section.

I think I’m already an excellent fucking mother. I think that making the decision to do what is best, what is safest for your child makes me an excellent fucking mother. That I’m not pushing for a vaginal birth just to push for a vaginal birth because some women think that that’s what’s important – no, what is important is the safety of my child.

And I told her I was offended, that the idea that my thoughts could change my condition was offensive, that I was somehow creating my situation by acknowledging the reality of my situation was offensive.

Reality:

Each day I deal with excruciating pain in my pelvis from an old injury. Some days the pain is about a four, and I am able to take short walks, to go up and down the stairs in my home, and on those days I take advantage of that relative pain. But other days, the pain is so severe that I can barely move, that getting to the bathroom is a challenge, that my pelvis gives out on me and I must catch myself before I fall. The orthopedic surgeon has said that it will only get worse, that I may need to use a walker or crutches as I get bigger. But each day I deal with this pain, and I grin and bare it, because it is just one more thing (pesky and painful, sure) that I must go through to get this baby girl Earth-bound. I’ll do it. Happily.

And each day I deal with the fear of a bleed: I cannot exercise; I cannot lift things above ten pounds, at least not from the ground, not if I’m using my pelvic floor; I cannot do yoga; I cannot stretch; I cannot exert myself physically (I can go for walks); I need to manage my stress; I cannot be in the heat longer than a few hours at a time; I cannot be on my feet longer than a few hours per day; I have to manage social activities with friends due to the adrenaline. Sure – I could try these things again, but the last time I did, I bled. And I’ve learned how to listen to my body, that when I feel a heaviness in my lower abdomen, an aching heaviness as though I’m about to start my period – that’s the sign to stop what I’m doing and get my feet up and rest. Everybody’s body is different, is able to withstand different amounts of stress, and this is what my body can handle.

I’m handling it.

And each day I deal with the fear that I will bleed, and it will be a bad one, and that she will come early. That she isn’t getting the nutrients she needs to grow (this is another possibility with previa). We had an appointment with the doctor a couple days ago and my last ultrasound showed that she is in the 14th percentile, growth-wise – so, small. So the doctor ordered another ultrasound to check my baby’s growth, but they can’t fit us in for a couple more weeks. So my husband and I are handling that fear as well. In my heart, I know she’s fine, I know she’s growing. But, still – fear.

But we are handling it.

So each day I deal with excruciating pain and each day we deal with fear and each day I work to funnel that pain and fear into positivity and hope because that’s so fucking important right now.

So when I am lectured about my thoughts or my words or having a C-section – yes, I must rant. I am doing everything I possibly can to keep this little girl safe and happy and growing, everything that is within my power to control. And there is still the chance that my placenta will shift and these restrictions will fall away – I’m holding onto that hope. But if it doesn’t, that’s fine too. Because I know she will be OK. Because I believe that if she chooses to come to this world early, she will be ready. That the excellent doctors will do their jobs. That my husband and I will continue to handle it. That we will continue to make the difficult, right, decisions for our daughter. That having a C-section is not a crime against my child. That, if I’m able to deliver vaginally if the previa moves and I decide to have an epidural (which I would need to because of my pelvis), that this, too, is not a crime against my child.

Women need to stop shaming other women.

Also, have some compassion.

Period.

Rant over.

Complete Placenta Previa, Another Challenge.

A dear friend told me she believes we aren’t given more than we can handle, and that she’s fairly certain I’m a shark; I’m fairly certain as well. I’ve been challenged, for almost a year now I’ve been consistently challenged – physically, emotionally, mentally – and I hit it, I hit the wall and I’m ready to coast – sharks can coast, right? But I can’t. Because here is another challenge…

For those of you who have been following my pregnancy journey, you know that I’ve had spotting throughout my entire first trimester. I had a pause without any spotting, and I thought that I was in the free zone, done with the scary shit, but then last week I began to spot again, brown at first and then bright red and then pink. Yesterday we had an ultrasound to see what was happening and baby girl is just fine – she’s spinning and twisting and waiving “hi” (whoohoo!!), but my placenta has covered my cervix, resulting in Complete Placenta Previa.

Now, there’s nothing I can do about this so there’s no sense in becoming too upset. What I can do, I am doing, which is meditating and visualizing my placenta moving away from my cervix. But at the same time, when you tunnel into the rabbit hole of the Internet and learn more and more about the condition you can become scared as shit – baby girl could be triggered into preterm labor (no!), and if I went into labor, I could bleed out because my placenta is literally covering baby girl’s exit path. So, a C-Section is a must. But how lucky am I that I live in a time and place that has access to medical advancements in order to safely deliver baby girl, and keep me as safe as possible?

I’m searching – I’m finding the positives.

Bed rest is no longer recommended for women in pregnancy as it can cause more harm than good (think blood clots), so I am on restricted activity for the remaining five months. But it’s interesting, this feeling that grows inside of you as your child grows, that I would do anything and everything necessary to keep this little girl safe, to protect her, to get her to this world; I suppose I’m already a mother. So I will restrict my activity. And I will meditate. And I will visualize this placenta shifting (they say that women with a complete placenta previa have a smaller chance of the placenta shifting as it can become stubborn when it’s already covered the cervix, but I will be that woman whose placenta shifts – I will be, dammit).

And each time I hit the wall and cry and feel as though it’s time for a break, it’s time to coast, I find myself needing to pull myself up and face the next challenge, but I suppose that’s just fine because I’m a stronger person now than I was yesterday or the day before, and when baby girl gets to this world I will continue being strong, setting an example of strength for her.

So…I accept my condition. I will stay away from the deep, black hole of the Internet. I will not focus on the scary shit, but on baby girl growing inside of me. I will read to her and sing to her and hope that she stays in there as long as possible. And all of these health challenges have been a lesson in accepting the things that I cannot control – a good lesson for parenthood.

But those that have book recommendations for me to read while on restricted activity – send those my way. And a heads up for the social media world – I’m going to be cutting back so don’t take offense; you can always call.

Again – thank you for reading, thank you for caring.

Xoxo.

Fear & Pregnancy Go Hand and Hand, At Least for Me.

Today I am 7 weeks, 5 days pregnant. And today I want to talk about the fear that comes along with being pregnant (especially when you’ve miscarried in the past) and how that fear doesn’t really go away.

This time, the stick lit up like a firecracker when I peed on it and there was no waiting or faded positive line, not like last time, but a sure, distinct positive. Because I’ve miscarried before, they did blood work to test my HCG Levels at 4 weeks, and this time my levels were high, really high, and tripling every 48 hours. (They were low when I miscarried and fell even lower after 48 hours.) My husband and I were ecstatic. He kicked right into work mode and purged his closet, something I’ve been asking him to do for a year, and then went around the house making a list of things to do and checking them off. I was loving this – my husband, nesting.

A week later I began spotting, brown blood, and for anyone who has miscarried before (and I’m sure those that haven’t miscarried before), any sight of blood is unnerving. No, petrifying. This pit in my stomach deep, cavernous, filling with fear. What could we do? More blood work. So in I went again to get poked, wait 48 hours and get poked again, and this blood work looked amazing, fantastic, super high, tripling again, into the thousands.

My hormones were off to the races.

But I’ve been cramping. Horrible cramping since conception. Cramps so bad that I wake three times a night to wander the house and stretch. This is scary, too: the changes happening to your body. And how those changes can mimic miscarriage, but turn out just fine – be absolutely normal.

So we waited and we watched and I began spotting again, pink blood this time, and so they hurried me in for an early ultrasound at 5 weeks, 6 days (this is where they placed me, conception on February 8th), and they found a heartbeat – a heartbeat! – but that heartbeat was low so they scheduled another ultrasound for 6 weeks, 6 days.

I can’t explain to you the trepidation, the balancing act of excitement and fear – I saw a heartbeat, but that heartbeat was low – and how to contain all of that inside of me, and to cope – how do you cope? Well, I became a bit guarded. I also began meditating – A LOT! – acknowledging my fear and then releasing my fear (as best as I can).

I continued to spot throughout the week, but didn’t call my doctor – what was the point? I’d be doing an ultrasound in a week – they would just tell me to wait and watch. And a week later my husband came with me to this ultrasound and there it was – the heartbeat, strong, 131 beats per minute – and there was the baby, tripled in size in one week.

My guard dropped and things became real. That I’m pregnant. That the baby is strong. That things are looking good. That all of the fear, that toxic fear that I can’t keep at bay still didn’t touch that little fetus. Little baby Tereshko chugging along.

This has been my mantra while I meditate: My body is strong; my baby is strong.

But now, this morning, I woke and immediately used the bathroom and there is bright red blood, more of it than I’ve seen this entire pregnancy, and my breasts are still sore, but not as sore as they usually are, and I’m no longer as nauseous as I was (you tally up these things when you’re pregnant, you take note) – so say hello to my old friend, fear.

Crushed, fearful, I called the doctor. Began writing this blog while waiting for the doctor to call back. And they did. And this is what they said: wait and watch, and bed rest.

We have another ultrasound scheduled for next week so we wait. And I sit here on bed rest grappling with the fear, letting out the tears because they’re toxic when they’re stuck inside, trying to remain positive and hopeful, but hopeful is a dangerous feeling, especially with pregnancy, and I don’t believe I will be truly at ease, that I will truly allow myself to be hopeful and excited until I am clear of the first trimester. But even then, my dear friend told me, you still have fear – you will still look at the tissue paper each time you wipe when you go to the bathroom, and when the child is born, you will still be fearful then, fearful that you will fail or hurt the child in some way – the fear doesn’t go away.

So I’m learning to live with it. Not to allow it to govern my life. But I’m not going to lie, not right now, not as I sit here fearful – I am afraid – and that is OK. That is honest, that is real. And I’m going to try and lose myself in my novel, and when that doesn’t work anymore, I’ll lose myself in someone else’s words.

I’m tired. I’m emotionally and physically drained. And I’m trying to be kind to myself, to my body, to my husband. But right now, it’s a little hard.

And my husband is in London. Which is hard. To have these conversations via the telephone. And like he said today, “This has been a rollercoaster.”

But we will have answers, more answers in one week. And until then: we wait, and we watch.

Meniere’s Disease: A Misdiagnosis

This has been such an exhausting (and expensive!) journey, this journey into my health issues – seeing doctor after doctor, doing test after test – at least one per day – and what have I learned? We must be our own advocates.

I had a flight in December and my body never regulated. Afterwards, I was functional, yet had a steady stream of motion sickness that never abated. I became clumsy, dropping things, bumping into things, stimulated visually so that I could no longer look at a computer screen and scroll – I could no longer work, I’m a writer and a reader – or be a passenger in a vehicle, or look at cars driving for that matter.

One brain scan later and my blood panel cleared, I saw an ENT who referred me to an audiologist, who did a bunch of hearing tests on me. They found excess fluid in my left inner ear, which sent me back to the ENT for a diagnosis. This ENT spent five minutes with me before diagnosing me with Meniere’s Disease. She put me on a water pill and a low sodium diet of less than 1000mg/day (and if she’d looked at my records, she would have seen that my sodium was already on the lower end and didn’t have too far to drop), and I ended up worse than before, my vertigo 5X worse, and in the ER.

Now, I never needed low sodium. I never needed a water pill. Because, guess what? I don’t have Meniere’s Disease.

I’m lucky, truly, because my best friend is an audiologist and was pissed at my diagnosis and my plan of action set by this ENT. She said, “You don’t fit the symptoms.” And I don’t – true Meniere’s patients lose their hearing (I have excellent hearing), they have episodes of vertigo that are debilitating, not a steady stream of motion sickness, like me.

I got a second opinion. Went to an ENT who spent time with me, who listened to all of my symptoms, who took notes, and he diagnosed me with Labyrinthitis, an inflamed balance organ (now, this diagnosis was still wrong, but at least it wasn’t a lifelong disease). He wanted to get a better look at my brain scan, so we did, and the scan showed that I have a tiny cyst on my pineal gland. Now, most people don’t have symptoms with these types of cysts, but those that do, have mine. So I was worried, worried I would have brain surgery on a cyst living in the center of my brain, but the neurologist cleared me, saying he was positive my symptoms weren’t from my cyst and no neurologist would touch the cyst with a ten foot pole.

Great.

But I’m still going to imagine that cyst disintegrating while I meditate, blast that cyst to pieces with my mind and my breath and visualization.

Now, this new ENT put me on steroids and sent me to vestibular therapy. He also wanted a specialist to take a look at me because I was a “tricky” case. So that’s where I went today, to an inner ear specialist, a Meniere’s specialist, and this specialist listened to my symptoms and immediately shook his head, rolled his eyes, and said, “You don’t have Meniere’s Disease. What you had was one flight too many.”

He told me what I already knew, that my body never stabilized after flying.

“It happens,” he said. It’s this huge long word that starts with an M. And he said, “Of course you ended up in the ER. You don’t need meds.”

So I don’t need meds; I won’t go deaf; I don’t have a chronic, life-long condition; I won’t always be dizzy; I won’t always be nauseas; I won’t always be land-locked; I won’t always be clumsy.

So what’s the cure? Vestibular and vision therapy, which I’ve already been doing, and it’s been helping – I can drive now, but I still can’t be a passenger; I can scroll; I can read; I can work (yes, only for brief periods, not full days, but it’s still work).

So why was it so fucking hard to get a proper diagnosis?

My best friend said that ENT’s misdiagnose people with Meniere’s Disease all of the time, and had I not had her to tell me to investigate further, I may still be spinning on water pills and fatigued with low sodium, debilitated.

So today was a good day. I got incredible news. I’m regulating. I’ve still got a long road ahead with vestibular and visual therapy, but this will not be, is not my life.

So thank you, friends. Thanks for taking this journey with me. Thanks for sending me your love and support. And those that checked in with me the week my husband was out of town and I was reeling from low sodium and an adverse reaction to the water pills – thank you. Really, truly. And, as always, thanks for reading.

I’m Struggling: Diseases Suck.

In December, a dear friend of mine (a piece of my heart) passed away. She was suffering. She had been in and out of doctors for two years and they had yet to be able to diagnose the autoimmune disease/diseases she was suffering from. And she suffered. Oh, did she suffer. But I didn’t realize the extent of her pain until she unexpectedly passed away. She hid that pain from me, from others, and put on a brave face, went dark and quiet so as not to “burden” those that love her.

But I wanted to be burdened. And I couldn’t understand why she would choose to suffer alone. I thought: This is what friendship is for – for me to help carry the burden and try to ease her pain, at least let her know that she isn’t alone.

But I understand now.

Friends, I’m suffering. And I’ve gone dark and quiet because in some way I am embarrassed by my inability to get well and so I only want to emerge when I am brilliant and bright, but what if that doesn’t happen? What if I need to adjust my way of life so that I am slower, less “brilliant”, but limited?

I broke my laptop. I broke my phone. On Christmas Day a bowl of spinach flew from my hands and my husband had a panic attack; this isn’t like me, to be clumsy – I’m sharp as a motherfucking tack. But it wasn’t until I broke a bottle of olive oil and sliced my two fingers and got eleven stitches between the two of them that I sought medical help (I was forced to – an open wound will do that).

Honesty: I’ve been clumsy, I’ve been dizzy, I’ve been nauseous, I flew to Chicago to attend my dear friend’s celebration of life and the motion sickness never left me, my eyes vibrating vigorously at all times. My primary care doctor ordered up a brain scan to rule out a tumor, a full blood panel to check for an autoimmune disease, she referred me to an ENT.

Blood is clear. Phew. Brain is clear. Phew. ENT sent me to an audiologist who performed an ECOG test, which showed that I have excess fluid in my left inner ear that is pushing on my balance organ causing the dizziness and nausea; she believes I have Meniere’s Disease.

Now, I’m lucky. I don’t have cancer. I’m lucky. I don’t have a neurological disorder. I’m lucky. I have excellent health insurance that has allowed me to find an answer. And to hear a diagnosis, I wept.

But Meniere’s Disease is chronic. Life-long. And you can only treat the symptoms.

Let that sink in.

They’ve got me on a low sodium diet (less than 1000 mg per day) and a water pill, and the dip in sodium and the dehydration landed me in the ER on Friday. The dizziness is worse, spinning, always spinning, and I scoot down the stairs of my house on my butt.

My husband is out of town for the week and I’m fearful of being alone in my own home, fearful I will fall, or my sodium will dip again and I won’t have the energy to call someone for help because that is what it felt like – extreme exhaustion in which pulling my hair into a ponytail had me collapsing on the floor.

I’m feeling overwhelmed by the possibilities of this disease (though I’m getting a second opinion – I won’t accept it), the possibility that I will always be dizzy (the meds for vertigo aren’t working on me), that I won’t be able to have a child because I’ll drop it, that I will eventually go deaf in my ear, that they say my right ear could possibly be infected and then I could go completely deaf, that I’ll never hear the piano again, that I won’t be able to sing any longer – that pieces of me that make me, me, will be gone.

But deaf is better than dead.

On Sunday, I lie down on the sofa spinning, feeling helpless and hopeless, but my husband played the guitar and I watched as he played for me the song we walked down the aisle to and I felt this overwhelming sense of love – this, here, is my husband, and even though I am unable to move, I can still see him and I can still hear him and I can still love him. I marked that moment in my memory – his voice, the strum of guitar – sounds amplified in my swollen ears; even broken, I am still loved.

If this turns out to be my life from here on out – at least I still have life. And I will need help with self-compassion. I will need to learn how to ask for help. But life doesn’t have to be fast. I don’t have to be sharp as a motherfucking tack. I’m not brilliant at all times; I’m not always bright. Right now, I’m a mess. So here I am, asking all of you, my friends, for help. Send me love, send me light, send me prayers – I’m weak right now and I need them.

Everybody struggles. Everybody suffers. This is my struggle and I’m suffering.

(But don’t worry. If I have this disease – I will garner my strength, your strength, and kick this disease’s ass. Just watch me.)