My Daughter’s Fight with a rare autoimmune disease.

My daughter is allergic to and cannot absorb iron, hence her iron levels are constantly low and she is constantly fighting severe anaemia and all the resulting side effects. This is a condition that effects .02 percent of people and very little is known about it. The immunologic basis of allergic hypersensitivity to iron agents is not known. Last year she was given an iron infusion, which sent her onto anaphylaxis, even with the use of  large doses of antihistamines.

The doctors can’t get to the bottom of her health problems and have said she cannot have another iron infusion unless she is near death as the risks associated with infusion are too high, the anaphylaxis may cause her heart to stop. So, iron agents will only be used if the benefits are clearly judged to outweigh the potential risks.

If she were younger, I would know how to be. I would take charge. I would talk with everyone involved, set up her appointments, be there for every single appointment, question the doctors, advocate for her, advise her what to do. But she is an adult, so I can’t do these things. Nor should I; this is her disease, which she will be dealing with for the rest of her life. She will learn to manage her health and her health care by herself.

But she is my child, the mother of two of my granddaughters. She will always be my child. I will always be there for her, whenever  she wants me at appointments, I am there, whenever she wants me, I am there. She is very responsible, she is capable, but I cannot stop my eyes from randomly filling with water, nor allay my fears. I cannot stop myself from lying awake at night, nor from waking each morning at 4:00 am, unable to sleep. She is my child and I love her fiercely and I cannot help but wonder why should it be her, why can’t it be me?

Then I remember, yes she is strong and  believe  all will be fine. She is her own woman, and this I know; I  love her and she loves me. 🌹

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Imagination, shapes and Airy Nothings

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You can’t ask that!

I am glad to have watched tonight’s episode of “You Can’t Ask That. “ as it dealt with sexual assault. It was painful and also cathartic. It was good to hear that freeze is common and not divulging is common- and that the victims mostly feel somehow it’s their fault and that self loathing follows.

I did not cry till after the program was done, but throughout the show felt uncomfortable, sad, angry and fidgety. It makes you realise that no matter how far something is put out of your mind, some things just act as a triggering to make you feel like it just happened yesterday.

One question was, “what did you do afterwards?”- interesting that most said, you just got on with your life, some, like myself, didn’t speak of it to anybody for years.

We have an amazing capacity to put things into a box in our mind and close the box tightly.

The Next … thingy thing?

Our Home Hmmm what could it be? How to change your perception of yourself, that is a question commonly asked and often not answered. Turmoil; In decay, the spirit of putrescence flutters with black wings in the autumn wind.

“Secrets. Everyone has them. The light of day and truth reveal some secrets to be nagging obsessions or habits, while other secrets may be as incriminating as a literal decaying skeleton in one’s closet.”
― Kenn BivinsPious

FireManIII

 

Our Home

To my friends and family, our home is a safe zone. A cuppa can be on in minutes, or a glass of wine if that’s what is needed 🙂 Our home is a place of respite and non judgment. You are welcome anytime. We can talk, share a laugh or just listen. A problem shared is a problem halved. Talking about a problem with someone else usually makes it seem less daunting or troubling.

We have food or we can always order take out, we can eat and cry. I will always do my best to be available… you are always welcome!

Darkness

Darkness can be deep and claustrophobic, so dense it strokes your skin. The darkness I often meet is thick with tears, hugging close like an old and familiar friend. It is like blue velvet, softly sensuous yet alluringly dangerous. Darkness folds about you like a felt blanket, sometimes cold, sometimes warm, sometimes comforting but isolating, even when the children of my imagination visit, darkness can be lonely.

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Mum hospital

re my Mum 26/10/16

Doctors- the rapid dementia caused by long term high BP, diabetes and TIAs->lack of oxygen to the brain. Arterial fibrillation probably coming on over past month could be from urinary tract infection and TIAs.

Wanting MRI because mum has a small- they think possibly benign tumour at base if her brain- doctors only told Kathy and myself, have not mentioned to Dad yet, waiting for MRI results. She is also covered with a variety of skin cancers, none melanoma…

They believe- as we have thought – she is having TIAs which also adds to dementia-

The medication for the arterial fibrillation they believe is too much risk -increases falls risk- they also said not having the meds is increased stroke risk. But it was agreed that the falls and bleed risk was too great.

Denise – social worker- said dad as her carer must be an enabler and husband- not her slave.  Denise said rehab would be a waste as mum couldn’t remember having it let alone remember what was taught. Denise also taught dad how to make mum get in and out of a chair.

Denise believes home is best for the moment so workers and assessments can be done for the future- she believes it will come to a point of no return sooner rather than later.

Dad knows that all we can do now is keep her comfortable and wait, he is hoping she passes at home before having to go to the hospital again. Luckily we were able to get a 6 week plan and level 2 plan to follow- Denise wanted ACAT assessment at home rather than hospital to give a better and more real picture of how dad is coping.

They are sending her home tomorrow- ACAT hopefully will call also tomorrow re first interview.

I don’t know, it could continue for some years, or end tonight, sadly I hope it’s not too long as she is over living and dad won’t cope with this sort of stress.

Serendipity

Serendipitous events guide and reflect our moods and life. The tumultuous river of our lives linking each one of us to others and to the universe about us.
I am currently reading “The Book of Madness and Cures” by Regina O’Melveny (a marvelous read) and today came to these personally pertinent words; “There are a few early years when Mamma amused herself with me as one would with a doll. She dressed me up in uncomfortable frocks. She twisted my damp red (brown) hair into ringlets around her finger…and told me not to move when her friends came over to talk and preen.”
This brought to the forefront of my mind, my early life, a life where I determined the worst thoughts about myself. I coped by creating imaginary worlds, where I was a sort of super hero. I would hide away quietly- it even got to the point where I would get upset if I was dragged away from my imaginations.
In the end my mother’s answer to my fidgeting and cries of pain as she did my hair was to have it cut extremely short. I looked like a boy. I remember one afternoon, I was about 11 or 12, my mother decided to send me to the hairdresser alone for a haircut, that was an interesting afternoon. The hairdresser asked, how I would like my hair cut, making decisions was something that had been not allowed, so this proved a dilemma for me (actually decisions are something I still struggle with). I asked the nice hairdresser what she thought, and it was decided about an inch off and slightly styled to soften my face. When I arrived home, mum exploded, she dragged me back to the hairdresser and exploded at the hairdresser- my hair was cropped very short again. For a season of my life I hated being a girl, as it made me more like her, my mother, besides I was constantly told how much I looked like my father, and because of my hair was sometimes mistaken for  boy. I sometimes even thought  maybe I was born the wrong gender. Hmm…

Unreported Crimes

    Even Today it Remains, The Most Unreported Crime.                    

It was one of those sultry summer evenings in January. Sweltering heat relentlessly seared the air. She was on her way to a party, nothing special, just a few close friends looking to break to monotonous searing temperature. Somehow, walking through this pressure cooker of an evening to the bus stop was unexpectedly reflective. Sweat beads were forming when the stylish car emerged from a neighbour’s driveway nudging her mind’s wanderings back to reality. She had never seen this car about the neighbourhood before. Nevertheless, she was only mildly surprised when it slowed to keep pace with her and his voice greeted her. He was friendly, neat and respectable.  He commented on the heat and asked if she would like a lift into town. At the time, this did not seem like an unreasonable request. She accepted, thankful for the ride, and glad to block the relentless rays of the sun pounding at her head. A thought wisped through her mind, “maybe this could turn into something good.” Ludicrous thoughts fill your mind when such sultry heat presses into your being.

“Was it a sort of madness?”  She would wonder in the future.A pang of uneasiness crossed her face as the car turned onto a road she did not know.                                                                   “Sorry, we took a wrong turn”… he said, smiling.

“Let me out,” she said, “I can get a bus from here.”

His retort cut the air, “Everything is fine. I just want to show you, ‘a great view…,’ ”

“Yes it is a nice view, but can we go now?” she appealed…

He said nothing, instead he grabbed her, and his violent breathe hissed across her face. She gagged as she found herself struggling to escape his prowling hands.

“Let me out!” She demanded.

The more she struggle the tighter and more brutal his ways. Frenzied fears welled within her, not only of him, but also of the consequent humiliations, shame and pointing fingers. She remembered her friend Jan; for her, life had become a nightmare.

“Maybe it would be better if he just killed me,” she thought.

Conflicting thoughts swelled within her exploding brain, as at last, the struggling stopped, and her body became limp. He thrust toward her wrenching arms, tearing at her clothes, while taunting, “You know you want this, you REALLY want this.” Tears welled within her but could not flow. She lay there sobbing silently, no longer struggling. Through gritted teeth she hissed, “Just, do it… get it over with.” She lay there passively, letting him have his way.  Then, it was over quickly. His semen spewed out, helplessly missing the mark. She lay in a crumpled heap, wet, stained with the Ajax smell of semen.

Unflustered, he slank back into the driver’s seat of his car, “Now that didn’t take long,” he  smugly sneered, looking through her as if nothing had happened and asking quietly, if she would like to go now?

She stared dumfounded at his sickly smile. A part of her felt like punching him right in that vile mouth, instead overwhelmed by her sense of total helplessness, she choked on words that would not form. She felt a sense of complete uselessness and self-loathing deafening her ears. She had no idea where she was. She wanted to be nowhere, to be in that soft quiet place with no one. Hurting both physically, but more emotionally she did not attempt to move.

Thoughts swirled madly in her head… “What am I? What sort of person lets this happen? Why am I so stupidly naïve? Why am I such an idiot? How could I let this happen? Why am I so weak and hopeless? What have I done to deserve this? What if he’s gotten me pregnant? No, in the end he couldn’t even get it in. What will I do? It’s my fault; I should have seen what type of person he is!”

Numb and shattered, she allowed him to drop her off in town. She didn’t say a word and never saw him again. She fixed herself up, pulled herself together, showered and bathed and showered again and again…, and then pretended it never happened. In fact, she almost convinced herself it never happened. She shoved it into the dark recesses of her mind, from where it would occasionally well up, only to be thrust deeper and deeper into her sub-conscious. Moreover, although she hated herself, for her lack of courage, she felt she could never let anyone know.

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It took many years for her to realise that this, “man,” who had so maliciously violated her, was absolutely the one in the wrong that the fault was not hers, she did not invite this act of violence, and worse he had probably done this to and continued to do this to other young women. More than twenty years have passed, and my greatest regrets are that she did not have the courage or self-esteem to know that she was in no way to blame for this incident. Moreover, she did not have the strength of character to overcome the stigma of social rape, to expose what happened on that hot summer night.

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