How My Bipolar Disorder Affected Becoming a Mother

Bipolar disorder is hard enough to deal with as an individual, but being part of a duo that includes a baby—even one not yet emerged from the womb—is so much worse. Pregnancy usually comes with swelling, nausea, cravings, etc. But one of my symptoms came not from pregnancy itself, but its combination with my bipolar disorder: I started to forget who I was sometimes. That’s a symptom that we’re still trying to manage even nine months postpartum.After birth, a lot of moms go through postpartum depression, but being bipolar, mine turned into postpartum psychosis (which I’ve written about here).

I heard a voice—a man—telling me to harm myself or my baby or he would do it himself. I stayed up all night just watching her bed, making sure he never came. I only ever saw him once: he wore a black suit with a blurred face. But I heard his voice constantly.Nine months into my daughter’s life, the psychosis is under control, and my medications are working again. As my husband and I tried to get pregnant, I had to switch my medications so that my baby would be safe. That regimen lasted over a year before I was about to give up on ever having kids and go back to my usual pills. The morning of my appointment to talk to my doctor about it, there was a plus sign on the stick.
So I had been taking my futile cocktail of pills for 22 months total and experienced more than my fair share of depressive and hypomanic symptoms during that time. I had panic attacks regularly and got more worked up as I realized the panic was not good for my baby.

Immediately following my daughter’s birth, my new doctor in California refused to give me my original medications. He thought that we should wait and see if the current ones worked well for me once the hormones wore off (even though they never really helped the whole year before I ever had said hormones). After finding a new new doctor, he allowed me to go back onto one of the pills I knew would work. It took the general six to eight weeks to kick in, and now I’m fairly stable in my moods.It was only after I got my meds under control that life became easier with a baby. Those few months just following her birth were a nightmare, but now the constant smiles and giggles from the happiest baby in the world turned life into more of a dream.

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This Land Was Made for My Son With a Disability, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a special needs mom and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son, Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat, least of which was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

Troy (left) with his twin, Hunter

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash strapped states would likely cut Community and Home Based programs first.

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood Medicaid provides job training, transportation, and independent living supports through local Dayton programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121 , remind them how far we’ve come as a nation in the treatment of our most vunerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

Follow our journey of advocacy and inclusion at

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Finding the Good in Each Day With Chronic Illness

There is something good in every day.

Is there? Is that even a possible concept for those of us who have chronic illness?

The initial response from the chronic illness community is likely to be a resounding “No”.

Pain, procedures, lack of sleep, lack of understanding, countless medical appointments & tests, chronic fatigue, lack of mobility etc. These all overwhelm the mind & body & constantly try to draw our focus away from seeing the moments of joy, moments that are good despite everything our bodies throw at us. images 1
It’s 9.30am & a chilly sunny Sunday winters morning here in Brisbane, Qld. Our winter has finally decided to arrive & being a lover of the cold, I’m a very happy gal. I’m still in bed having slept in after a disturbed night & my beautiful husband is downstairs getting breakfast for us.

My legs don’t move in the mornings until my pain meds start to kick in & even then I struggle with mobility & pain constantly throughout the day, due to my the non healing breaks in my femurs & feet as a result of my Rare Disease.

Rheumatoid Arthritis also plays a big part in causing constant pain in my hips, hands, neck & shoulders.

So while all is not good, there is definitely something “good” to start my mornings. I feel very spoiled to have breakfast in bed every day delivered on a lovely tray. It’s a special bonus found in a chronic situation.

There are other “good” things I enjoy every day. Some days they are a little harder to find but they are always there….I just have to look for them.

I enjoy my home. I enjoy pottering in it. I enjoy my soft furnishings & the pretty uplifting areas I’ve created to provide places to rest comfortably & renew my strength. It’s my sanctuary.

I love my online forum & conversing every day with others who truly understand what it’s like living with chronic & complex disease. I love that I have the time to invest in this community & administer it in a way that makes it a safe place for others. I also enjoy actively being involved as a member of a couple of other select online forums.

I love being able to muse & write when moments of inspiration arrive.

I love listening to music. I love singing.

I love watching my favourite TV shows at lunch time & during my late afternoon rest period.

I love the relative freedom that has come with medical retirement. I obviously miss my work & good health but I am so relieved to not have undue pressures that I just could no longer physically cope with.

The more I look the more I find the good in every day.

My list could be expanded but I’m going to stop & enjoy one of the things I really love….my late morning coffee!!

What little bonuses do you enjoy as a result of your chronic illness? You might be surprised to find what good things have been added to your life, as a result of chronic illness, when you stop to think about that question.

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.


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Confronting My Thoughts When Painsomnia Keeps Me Up at Night

It’s 1am and, having retired to bed two hours ago, I’m back downstairs writing this. Sleep is a strange and erratic bedfellow. Sometimes I can’t get enough of him, yet at other times he eludes me completely.

I am 54 and have chronic illnesses (yes, plural – it seems that over the last 3 years I’ve been collecting them like unwanted co isolation prizes). At the last count, the list was thus: Lupus SLE; Antiphospholipid Syndrome and Osteo-arthritis. I also have two tiny brain aneurysms, have had a mini stroke, have sleep apnoea, pulsatile tinnitus and a movement disorder. If I’m not travelling to a hospital appointment, I’m at home, or close by. If I do venture out, I can manage an hour or so in a cafe or browsing one or two local shops. Then I have to go home to rest. I HAVE to. The fatigue causes light-headedness, panic attacks, folding torso and flailing arms, any or all at any one time Claudication (is that the right word?) means my legs turn to concrete and I can no longer walk or drive myself home, My husband is my rock and I cling to him like a scared, timid mouse. But those are good days. Others I can’t move for the enveloping, stifling, pain and fatigue. Those days I sit in my own fug of unwashed-ness with traces of days-old make-up still on my face.

Several factors keep me awake and I never know which it’ll be till it’s there staring me in the face. Pain, obviously, is a biggie. As are the odd neuropathic sensations, muscle spasms, restless legs, a folding torso.

Tonight, though, it’s my own thoughts keeping me up. These are the biggest aides to insomnia and no pill is going to numb them. My life has shrunk to such an extent that a seemingly trivial aside or comment on Facebook or in person can take over my thoughts and cause me to relentlessly stew. As was the case tonight. A friend commented on the great “social” media site that she was lonely because family and friends were too busy to call her. I wanted to reply, defend myself, say “Yes, too busy surviving day to day! Call me! Ask how I’m doing!” But of course I didn’t. Facebook is the place where I present my positive, up-beat, bubbly public persona. No problems here! I’m fine, really! As I am out in the street, dressed and make-up on for the first time in a week, people say how well I look, that I must be getting better. (Ha ha to that, I think to myself!)

But at night, when my darling husband is sleeping soundly beside me, and when my guard is down, a different me rears its ugly head. This me is fearful, anxious, mournful for my old life and the energy I had. This me is resentful of all the pills I have to take to keep me going and of the CPAP keeping me breathing. Sometimes this me just no longer wants to be.

And sometimes this me is SEETHING! If my blood wasn’t so sticky,it would be boiling! How dare I get these ailments! Why me? Haven’t I suffered enough in my life (that’s a whole other story!). Why can’t I be the bright, fun, enthusiastic, sexy woman my husband met 8 years ago?

So I get up, creep downstairs, and write. Put things into perspective. In the dark silence of night I can write with the total honesty that I just cannot muster during the day. Then,purged, I can sleep for an hour or so and wake up feeling “fine, thanks”!

No-one but you, fellow survivor, will read this. I hope it helps you in your dark times, or inspires you to try the writing business for yourself. If not, there’s always online Mahjong 🙂

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A Year of My Life With Rare Diseases in Photographs

{This story is a photo series. I’m not sure how to submit this? My full photo series is published at I’m not sure if they will all come through in the copy/paste here. Thank you!!}

A Year of Living with Rare Diseases in Photographs

May is Lupus Awareness Month. Lupus is one of the many rare diseases that I struggle with everyday*. It is often hard for others to see what my life looks like. It is so far removed from a typical life of a twenty-something young mother- or for that matter from the typical life of healthy individuals of any stage of life- that my words don’t often convey well enough the truth. And I’ve found that without being able to understand at all someone else’s truth, we tend to dismiss their lives as a whole. So over the past year, from last May to this, I’ve tried to collect photos, mostly self-portraits, that show some of the truth of this life. There will, of course, still remain something intangible. It is difficult to catch frustration, pain, desperation, poverty, surrender, gratitude, the feeling of being completely out of control, the way disease seems to infiltrate every aspect of life… but I’ve done my best to capture little pieces of it here.

I suppose it may be helpful for those who didn’t know me prior to being sick, to know how my life looked then. I was fit. I went hiking maybe 100 miles or so in a month and worked full time while in school full time until getting my Master’s degree in marine biology (and then subsequently getting sick). I volunteered quite a lot and did everything in my power to minimize my impact on the planet. Now that my life has changed, there is a new me and new choices I must make, which I don’t always like. No matter how I feel about it, this is how my life is and how my life will be, and I try my best to make the best of it. And sometimes, it can be pretty awesome too.

*I have been diagnosed with lupus, mixed connective tissue disease, antiphospholipid antibody syndrome, myasthenia gravis (which diagnosis was actually called into question during this year), fibromyalgia, and- diagnosed during this year- hyperadrenergic postrual orthostatic tachycardic syndrome and baroreflex failure. I have nerve, muscle, and joint damage, resulting in loss of function of some of my basic systems. This also led to my surprising very premature and dangerous delivery (before which I had thought I was healthy). Not all with lupus will have a journey like mine!! Everyone is different (especially since I have several other diseases) and much can be done with proper care as well.

Being sick has made me require a wheelchair. Unfortunately, so much of the world is inaccessible, especially so much of the natural world (let’s not pave it all over either!). I am often just on the outside of experiences, such as taking my son to the beach.My husband, knowing that I am not content with the perimeter, particularly of nature, has dragged me in my wheelchair to many an inaccessible place. The wonder of nature has thus far been stronger than the physical pain and shame/anger at myself at needing to be dragged across the beach.Here my husband is trying to transfer me to the bench (that’s a heart monitor, not a purse). My husband has had to fill the role of caregiver as well, and not just to me, but to my disabled son as well. I have lost a huge amount of independence, which is maddening. It is also maddening that my husband has lost some of his independence as well by becoming a caregiver and that he shouldn’t have to do that at 30 ears old.  {You can see our wedding photo behind him- in sickness and in health, right?}Being sick is painful. My joints often hurt too badly to be used and several times a month hurt beyond being able to respond to any kind of treatment, leaving me in agony, and at times in tears. I have round-the-clock pain medications, but illness is painful.There are mountains of paperwork required when you are sick and/or disabled. Between keeping up with medical insurance, medical and pharmacy bills, many government programs, medical documents and records….. the amount of paperwork is something I couldn’t have fathomed. The other part that I couldn’t have fathomed is the poverty. I somehow expected that in this developed country, we take care of our sick and disabled, but it is a much more desperate reality. You can have your short term survival or your long term survival, but it is not easy to have both.I wear a BiPAP ST to sleep. I breathes for me, giving me a pressure to breathe both in and out, since my respiratory system is no longer able to breathe through the night on my own or keep carbon dioxide from building up in my system.

I have vomited out of the side of the car way too many times to count. My body has become too weak to hold it together through the hard work of vomiting, and so I often end up injuring myself in process now, such as tearing tendons in my shoulder or popping dozens of blood vessels throughout my face and eyes.  To keep my many rare diseases under control, many prescription medications are needed. I take a over a dozen medications. Each one is thought out with my medical team (no I don’t want to try any supplements).A device that helps to open my lungs when my breathing is worse.Sometimes I get too sick to participate in the world for periods of time. I feel like I can push through a lot of the time, but sometimes I simply get too sick and get stuck in bed for a while.….But I don’t spend all of my time in bed alone! When I’m not well enough to participate in the world, my family usually keeps me company, which is probably who I would’ve hung out with that day anyways. So I’m thankful to have awesome company.I have spent many hours in the comfortable chairs of the Infusion Clinic at the university hospital. Once a month, I spend a day waiting while immunosuppressive drugs are slowly infused into my body.  Chemotherapy and other immunosuppressive drugs are often used to control autoimmune diseases, especially those whose disease are more aggressive.When I was pregnant, I imagined all of the things I would do with my child, and pretty much all of them involved traipsing through nature, exploring. The way my motherhood has actually played out has been different, and although we have found many things to enjoy together, I would love much more to be able to run in the waves with him and to share with him all of the secrets of the natural world.The muscles in my bladder are nonfunctional, which requires me to use catheters. The amount of medical equipment required to keep someone that’s seriously ill afloat is insane. And every time I need to leave the house, I feel like I am bringing the house with me. Our calendar is filled with doctors and medical tests and therapies. Between my son and I, we usually have at least one appointment per day. We have on average 40 appointments (including therapies) per month. The amount of medical care alone is often exhausting.We spend so many hours at doctors offices and hospitals. We usually make a weekly trip to either the university hospital for my care or the Children’s hospital for my son’s care- either trip consuming an entire -long- day. Many, many hours have been spent at these hospitals.Countless hours are spent in doctor’s visits- a couple every week.My son is used to the long car rides back and forth to the city to get to the only hospitals in this region of the U.S. capable of treating us. (Sometimes he still gets tired out)We have spent so much time in hospitals, in both planned visits and emergencies, that it feels familiar.Inclusion & Accessibility- Here is an example of something that I would have loved to be included in, crawling through a Jefferies Tube with my family (Star Trek), but was not something that I could physically access.Inclusion & Accessibility- This was something I could physically access. I think something that is very difficult to understand though, is that even when you can access something, it is rare to be fully included in the way an able bodied person is. Although I am grateful to be included, it is often on the perimeter or in an altered way, not fully included. I am grateful to have been able to participate in this photo with my family (and Klingons), but I was off the set and difficult to frame into the photo, difficult to interact- on the perimeter. After a while a life on the perimeter, an adjusted life, wears on you a bit. (This is just one of many examples- we had a ton of fun at this event!)I have had so many vials of blood taken for testing. Every month I get several tubes of blood taken as routine testing, then add on any extra vials for other concerns, other testing, or retesting when my blood work comes back concerning. I used to be afraid of needles (fainting afraid), but this consistent exposure has completely cured me of this fear.Complex and/or rare diseases come with a lot of testing and, as pictured above, a lot of medical imaging. In addition to diagnostic imaging, I often get checked for pneumonia, blood clots, and joint/bone damage.Neurological testing is often needed to assess the status of my neurological diseases. Urinalysis is a common test to accompany blood work, especially for lupus patients, and is done often. Sometimes urine even has to be collected over 24 hours, which is always inconvenient.Countless amounts of testing are needed, even when diagnoses are not being made. This sleep study was to find better settings for my BiPAP to ensure that I am breathing well and getting rid of as much carbon dioxide as possible.Due to my son being born premature and having autism, he requires several weekly therapies.Due to my illness (which didn’t start until pregnancy), my son was born premature at only one pound. He had to be intubated so long after birth that he now has lung disease and is medically complex himself. This photo is from an airway surgery he had this past year.My son’s lung disease makes any respiratory virus dangerous. My husband and I have basically become his EMTs as well as all the many other hats we wear.My son is medically complex and his life is just as full of testing and doctors.Due to my son’s autism, our lives are always a little out of hand. And his needs have compounded with mine to require a lot of caregiving, which is all on the shoulders of my husband. His needs have shaped his homeschooling, but his strengths and interests have shaped his homeschooling just as much.Lupus causes me to be very sensitive to sunlight, which means that my skin needs to be covered when we go out.It is hard to balance between accepting my limits and pushing them. Lupus often causes fevers, which I could live with on  any given day.I’m not sure, had I remained well, that I would’ve found such happiness in photography. It is one of the things I am most thankful for being given in my illness.Some relationships have suffered since becoming sick, but some relationships have grown even stronger. There is nothing like feeling like someone understands you and accepts you for who you are, illness and all. And seeing my son who has his own illness and disabilities accepted is all I could hope for in the world. I feel like there are people there for me in the world in a way that I never experienced before becoming sick.

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To the Psychiatrist Who Told Me I Should ‘Find God’

This is my latest story from my blog. (
Thanks 🙂

Dear Psychiatrist,

You were the very first psychiatrist I saw. I was young and in the early stages of my diagnosis.  Just getting in to see you was no mean feat. Despite having a referral from my GP I still had to endure twenty questions from your receptionist and many phone calls before she actually made me an appointment to see you.

You gave the impression that I was wasting your time and diagnosed me within ten minutes of meeting me. I’m really not sure how this is possible but you did it and prescribed me some medication.

During our conversation you told me I should find God and get better for Him. This is probably some of the worst advice I’ve ever received. I personally don’t have a faith. I don’t believe in God. While I fully respect your faith and right to follow your religion, I don’t think pushing it onto others is a good idea. You also need to respect my and others rights to not have a faith or follow a religion.

There are so many issues with this advice it’s hard to know where to start. Even if I did follow a particular religion, prayer is not going to make me better. While I acknowledge that prayer is helpful and therapeutic for some it doesn’t solve the problem. An over weight person cannot pray themselves thin, a diabetic person cannot pray their insulin to start working properly. Getting better takes work, medication, time, therapy, effort.

Having faith in God may be perfect motivation for some people to get better. But not everyone. Even if a person has faith it may still not be enough to help them get better. Each individual will have their own reasons for wanting to get better. Perhaps next time you should have a more in depth conversation with your patients to find out what they are. It could be their children, their spouse, their friends, their dog, any number of things. Maybe they don’t have any reasons to get better. Help them find some without being so judgemental and be open to each individuals unique set of circumstances, beliefs, culture and identity.

From your former patient.

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4 Things to Keep in Mind If You’re a Teenager With Chronic Pain

Having Chronic pain is bad enough, let alone trying to be a semi-normal teenager.  People try to tell you the things you can and cannot do, they try to discourage you, or encourage you to do something you know you cannot do or something that will put your health at risk.
They demote your pain, and how bad it gets.  They demote how your symptoms can be set off by the tiniest of things and skyrocketing as fast as you can say, “I don’t feel well.”.
Everyone wants you to be a normal teenager so badly, that they try to will it into happening, but it doesn’t.  I have had my fair share of people blowing up at me in frustration saying they just want to get better and be able to be a normal teenager.  And you probably have to.
But, guess what! We are NOT NORMAL TEENAGERS.  No matter how badly we want to be.  Trust me, I get it.  You try your best to live your life, but you are just going to have to live it differently than everyone else, and that’s okay.  You do what you have to do.  Plus, who wants to be normal anyway? Normals boring. 😉

Let me tell you one very important piece of advice that took me FOREVER to learn.
You do NOT have ANYTHING to prove.  You do your best.  That’s it.
If people push you, you push right back.  And eventually they will learn and observe that you are doing your best, and taking it one day at a time.
The expectations people have set for me are crazy and incredibly unrealistic. They want you to be able to function as a normal teenager so badly, that they set their expectations that much higher, and you feel like you have to meet or even exceed them in order to prove something.

Once I stopped trying so hard to live up to the expectations people have set for me that are not realistic, and just started trying to reach my own expectations and goals, I started enjoy life a LOT more.

2.  Be realistic about what you body can handle.  I would rather not do that one thing today, then not be able to do anything for the next few days, or risk  throwing myself into a flare for weeks at a time. You never have to push yourself past what you KNOW you can handle just to make a point, or to be like everyone else.  I know it’s tempting, and frustrating.  But, if you do that one thing that will push you too far today, you most likely won’t get to do anything the next day.  Do as much as you can, and then rest.
It’s good to push yourself every now and then, but don’t dive right in and go a mile when you should have gone 50 ft.
I am not saying I have perfected this myself, I end end up going  the mile or more sometimes, and paying the price.  But, I have found myself getting out there and having fun with my friends a lot more by slowly upping the things I do.

3. Tell your friends, or at least your closest friends.  They need to be aware just in case of an emergency, let them know what could happen, and walk through the steps of what to do to help you in that situation.  Honestly, I was friends with my best friend through the entire process of my health deteriorating.  And I couldn’t be more thankful to have her in my life to talk to on the hard days, be understanding when I have cancel on our plans, and I can’t even count the amount of times she has stayed in with me and watched movies instead of going out and doing that fun thing we had planned because I wasn’t feeling well.
I know it’s scary to tell people, and if they can’t handle it, then you don’t need them in your life anyway.

4. Don’t let doctors talk down to you.  Don’t let them push you around, or tell you how YOU are feeling.  No, only YOU know how YOU are feeling.  They might know how to help, but ultimately, it’s your body, not theirs.  If you don’t like the doctor and there is another one available, try that other doctor and see how that one works out.  It took me 3 years to perfect my team of 8 doctors that respect me, listen, understand (or at least try to), and ask how I feel about the treatment plan, or gives me options to choose by how I am feeling.

Honestly, everyone’s list is going to be different.  But, it never hurts to getting a little spark going to help recognize what your list is so you can keep it in mind.

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