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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with my beautiful daughter 😎

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…