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    Losing Joanna

    Part 1 of 2 I slit the edges of the package open without thinking, carelessly sorting mail and hanging up my child’s backpack at the same time. In the box was the pink fuzzy monogrammed blanket I had ordered from Pottery Barn the week before for my friend’s baby naming ceremony. Monogramed in loopy letters was the name: Joanna. It was the same name my patient had given the baby who had died in their arms that week after a traumatic birth. As I tried to quell sharp pricks of tears, I went into the other room to sit on my rocking chair, instinctively needing the repetitive soothing motion. I wanted to cuddle up in the soft blanket, holding it to my cheek, but recoiled from the name, once so musical, now a reminder of how cruel life can be.

    I had seen the couple in treatment for a few years, as they underwent countless IVF and other procedures in an attempt to get pregnant. I accompanied them as they rode out vertiginous cycles of hope and despair: Would the acupuncture be timed well for her cycle? Would the new procedure take? Could they survive as a couple as the hormones she injected brought on bouts of emotional chaos? Would this be the time she became pregnant, or would it be another bitter disappointment? It felt a bit like spelunking, groping in the dark through a cavernous unknown. Few people understand how difficult #Infertility is, not just emotionally but bodily. They were committed to one another, but their bond was daily undermined by infertility. The therapy felt high stakes: either we’d together find the light or become permanently lost in the dark.

    Six months into her pregnancy, they declared they’d made it through.

    “I think we are cured,” she laughed, as we had our last session.

    After years of treatment, of arguments, repairs, bursts of fragile hope ending in sadness, there was a whole new depth to their relationship. I felt invested in their pregnancy project, and immense joy for them when they passed the 3-month mark and made the move from the infertility clinic to a regular OB-Gyn. In that moment, I felt less like a therapist than a guide, reminding them that they were in it together, that turning toward one another when things were hardest was the only way through.

    I saw a new side to them as her healthy pregnancy progressed. They had always sat in separate chairs in our sessions, but then they moved to the couch, his hand stoking her back occasionally as we spoke. There was a softness between them. I agreed that we had come to the end of our work together, an intense collaboration that felt satisfying and complete. They promised to send a baby picture when she arrived.

    A few months later, the phone rang. It was his voice, frantic and shrill.

    “She can’t get out of bed,” he kept repeating. “I can’t get her to move.”

    I sat down heavily, my body tense. “What happened?” I asked him.

    He paused for a long moment. “We lost the baby. We lost her—her name is-was-is-Joanna.” His voice was raspy and dazed.

    I tasted metal in my mouth. “What can I do?”

    “Can you come? I mean, here? She really can’t get out of bed.”

    I arrived at their brownstone building and went up the stairs, acutely aware of the baby strollers and child-sized rainboots outside apartments as I climbed. I entered and felt a strange unease. I’d rarely spoken to them on the phone, never mind visited their home. Therapists don’t see patients in their homes, but there they were, sitting on the floor surrounded by the brutal reminders of the baby they never go to know. I sat down beside them.

    “We don’t know what to do with all this,” the husband motioned to the piles of impossibly small onesies and newborn diapers stacked on the chairs. “We can’t even open that door,” motioning to the baby’s nursery. I tried to move as little as possible as he spoke, afraid that the wrong gesture might at any moment shatter their fragile equilibrium.

    “And we can’t seem to go outside,” the husband said. “How is it that people are just acting normal? There’s this disconnect—it feels like this should be on the front page of the newspaper, that the world should be as altered as we are. But they are all the same. Life is just going on. Only we’re not the same.” Their knees touched, sitting next to each other on the floor. “What do we do now?”

    I searched for an answer but had none. We sat in a weighty silence.

    Eleven years have passed since Joanna died. I still wince when I hear that name called on the playground, or by a teacher in my daughter’s classroom. That name, Joanna, is for me buried, along with the tiny body who never heard her name.

    Recently the wife called me out of the bl

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    Losing Joanna

    Part 2 of 2 ue, asking to have a session, this time by herself. She caught me up on their life—a gorgeous 7-year-old boy, a move to the suburbs, new work for them both.

    “Joanna, though, she’s here. She will always be here,” she choked out. I swallowed the lump in my throat.

    “I will never forget coming to your apartment the week that she died,” I said.

    “I forgot that you are there,” she murmured. “I think that’s why I wanted to see you. I wanted to talk to someone else who knew us as parents of two children.”

    I sat quietly while she cried.

    “I don’t know why her eleven-year anniversary shook me so much,” she said, still tearful.

    “I hate saying this, but it’s true.” She looked down at her lap, picking at some loose threads on her dress. “Without her there would have been no Jonathan. And that I just can’t imagine. He is just such a delight in every way. I know every mom says this, but it really is true. I don’t believe in God, but if did it would be because he came to us. But I hate saying that about Joanna, it feels like a choice between them.”

    “Does it have to be?”

    “What do you mean?” She leaned forward.

    I thought about the ghost of Joanna, how many times I’ve thought of that powerful afternoon I spent on their floor, and how I too carry her brief presence in the world with me. The last trip the couple had taken before her pregnancy foreclosed travel had been to London. She had been particularly taken with the symmetrical rows of birches outside the Tate Museum. They had imagined Joanna swinging in the birch trees, playing and laughing as she ran from tree to tree. I winced as I remembered how I had encouraged them to picture their daughter, to give themselves permission to dream about holding and playing with her despite the ordeal they had experienced getting there. They had found the Robert Frost poem “Birches,” which I happened to already love.

    Sitting with her, the poem came back to me.

    “Do you remember how we imagined Joanna swinging in the birch trees?”

    “I do,” she smiled, wiping her tears. “I still love Birch trees.”

    “You know there’s something I never said back then.” I studied her face and swallowed. “Those trees in the poem, the reason they were weighed down was because they were covered with ice. Not because of the boy swinging on them. They bent almost to the ground but didn’t break.”

    “What?” she looked startled.

    “The boy in the poem, he did swing between the birches the way we imagined Joanna, but their branches stayed bowed down because of the ice.”

    She blinked.

    “I totally forgot that part,” her voice trembled. “Joanna was born in an ice storm.”

    “I remember,” I said.

    “That image of swinging freely and the birches being weighed down with ice-they are both in that poem…”

    “I sometimes don’t know the boundary between grief and love for Joanna…Are you saying that I can get to the place where I can hold both children?” Joanna’s absence felt palpably present between us.

    My heart pounded as I responded. “No, I’m saying you already do.”

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    Kallmann syndrome is not the same as delayed puberty (or I am not a late bloomer).

    A common theme with rare disorders is the delay of diagnosis.

    I was seen as being a "late bloomer" when I had not started puberty by the age of 16. Even though I had two of the extra symptoms, lack of sense of smell and poor hearing, I had to wait until I was 23 before I got the correct diagnosis and was put on testosterone treatment.

    Late diagnosis and treatment can make such a different to fellow patients.

    Even with treatment patients do not experience normal puberty and would require extra treatment if fertility is desired.

    One issue patients can experience is that we are mixed up with "late puberty" patients. Some people assume that after treatment all is normal.

    Delayed puberty patients can experience normal puberty after a short course of treatment and will experience normal puberty and be fertile. Patients with Kallmann syndrome (male and female) do not experience normal puberty, will need life long hormone treatment and require specialist hormone treatment if they wish to be fertile.

    #testosterone #kallmann #puberty #Infertility #latebloomer

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    Does anyone else feel broken or not whole?

    I feel broken and inferior to other women. I feel empty and as though I do not deserve to be a woman. Infertility I is getting harder and harder to cope with

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    My Pituitary Story

    Part 1 of 2 The Pituitary Foundations Awareness Month – Live Well With Pituitary Conditions

    Patient Stories Submission – The Pituitary Magazine – 1177 Words

    Although my Pituitary journey officially began in 2008 I’m convinced it began long ago as a child. I can recognise the signs and symptoms. Especially when faced with stressful situations. Times when exercising at high levels of intensity in sporting activities.

    My ‘actual’ diagnosis came through an unconventional route, as it does for many. A tremor developed in my hand. Headaches, dizziness, sickness and being run down were daily features. Due to the tremors, I was referred to a neurologist. He gave me the choice between living with it and not knowing if there was anything serious, or having a brain scan. Stating there was a 25% chance of something showing. Am I glad I had that scan? YES! However, my follow-up was very brief and was pushed out of the door rather quickly, only being told a lesion had been found.

    Left waiting and wondering for 2 weeks was not helped by a letter that hit the doormat talking about Pituitary Surgery. Before being connected with an Endocrinologist. Pituitary Adenoma with Apoplexy was the diagnosis I got and needed. For someone who had just battled through training for and running in a London Marathon (completing it somehow) leading an active social life and working at an amazing job, this was a real shock.

    Numerous tests and scans were now a part of everyday living. The terms LH, FHS, progesterone, prolactin, and cortisol formed part of everyday language. At one point my prolactin levels rocketed from a secure 150-7500 in a matter of 3 months. A battle with medications and side effects ensued. Including three long years with no periods at all. Infertility also surfaced and my consultant urged me to grieve. I don’t think I will ever fully accept that. For me, that’s been the hardest part of the process.

    A few turbulent years were to follow. With the battle to find a treatment, I could tolerate. Needed to suppress the prolactin. The impact of a decline in neurological health, and the return of chronic fatigue/pain, I had suffered with at varying levels since a teenager. Largely down to Ehlers-Danlos.

    Another twist came as I tumbled down the road into pituitary insufficiency and then further into Addison’s. The diagnosis hit me hard. Fear set in and everyday normalities became mental battles. Shock packs and careful monitoring. Now having to manage both pituitary insufficiency and hyperprolactinemia. By this time I had lost not only my health but my career, sporting activities, hobbies and purpose in life.

    Added stress and struggles of my brother’s illness and subsequent death sent my mental health tumbling. Later that year a Psychotic Episode occurred to make matters more complex. Careful medication monitoring is key for me. Balancing hydrocortisone with antipsychotic medication is difficult. The withdrawal of Cabergoline (for prolactin) was essential.

    Some luck was to lead me down a different path. I fell into two things that kept me going. A Para-Swimming career ensued. Looking for a sporting hobby I joined a local swimming club. It supported my mental health and general well-being. After classification, things progressed fast: achieving National titles, swimming in International events, and breaking British Records. Even travelling to Nice to participate in the European Masters Games. Working with top coaches and training with elite athletes. All amazing experiences and unexpected.

    The Pituitary Foundation filled the other part of that void. I became an Official Campaigner. Initially supporting on social media, taking leaflets everywhere – hospitals, swimming pools, doctors! Telling anyone I could about the perils and challenges of all things Pituitary. The understanding of the hours put in made it easier to feel like I’d contributed. I could help when I felt well but pull back when not.

    Creating Time To Heal was a way I thought I could help others face the same battles as I did. Proud of my website and the message it aims to promote. At the centre of the website is my quirky and creative blog. The spelling and grammar may not be perfect but they all come from the heart. Being added to The Pituitary Foundations’ list of patient blogs gave me great satisfaction.

    In addition, I was asked to become an Active Essex Disability Ambassador for the Essex All Together programme. It aims to inspire, support, promote and deliver accessible exercise and sports provision for a broad range of LTHCs and Disabilities. My work has been celebrated with a page of my own on the Active Essex Website, through the Active Essex Sports Awards and within Ambassador Team Meetings.

    Both volunteer roles have

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    What is the toughest conversation you’ve ever had about infertility?

    Talking about infertility can be really challenging — the grief, the anger, the shock, the emotional lows — especially when faced with stigma or lack of awareness from others.

    If you can relate, how did you navigate that tough conversation?

    Feel free to share your story and experiences in the comments below 💌

    #Infertility #Endometriosis #OvarianCancer #Grief #PCOS #ChronicIllness #ChronicPain #RareDisease #CheckInWithMe #MentalHealth #Anxiety #Depression #selfcare #Trauma

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    Infertility

    All my friends are having babies and a say congratulations and act happy then I cry as my heart breaks and I fall into my depression no not fall crash in to depression.i hate my body how could you do this to me. #Infertility

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    I did a thing #CheerMeOn

    Infertility depression has been wearing me out: I’m so tired of the monthly disappointments. But today, after another failed iui, I managed to pick myself up and get a workout in. I still feel fucking awful, and I’m not excited to do another round of any treatment, but I’m proud of digging myself out of the hole enough to do this. #Infertility #Depression #HypothyroidismUnderactiveThyroidDisease #Disability

    4 comments