More and More Medical Misadventures

disability, Family, Uncategorized

My permanent sacral nerve stimulation device was fitted almost a month ago and I’m going through the settings to find the best programme for my bladder to work properly. these implants are very expensive and I am very grateful for the opportunity given to me by the NHS to have a life changing device. I am already feeling the benefits of much less pain from my bladder which is fantastic. I carry my battery around with me all day everyday in case I need to turn the device off at any time. It’s become second nature to have it in my bag wherever I go.

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Life with children with EDS can be at times stressful in the last few weeks we have had 3 opticians’ appointments with Robyn due to a turn returning in her left eye. She had new stronger glasses to try to correct the turn but this has been unsuccessful so she has been referred back to the hospital to see if we have any options left to try to fix the turn. The appointment came through for next week already which is fast. Surgery is an option but Robyn is not keen on having a third eye surgery. I also found out she doesn’t have proper 3D vision as she should have and there is nothing that can be done about it which is a shame but as she will never have been able to see any differently, she will never know any difference. She has 2 hospital appointments in the next month for her dental problems. She is waiting for surgery to remove 4 teeth that are stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately. robyn teeth As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having EDS will probably crop up throughout their lives which is a shame for them both as the condition can affect many internal organs and many of the joints in the body. Robyn’s pain has been increasing lately in her legs so we are going to try some new physio exercises and I have been trying some massage to see if that helps. Every night she takes a hot water bottle to bed to ease the pain on some of her joints. I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have.  Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.
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Monday is fast approaching, as dramatic as it sounds Monday could change my life. I’m due to have surgery to fit a permanent Sacral Nerve Stimulator after finally getting a diagnosis for my bladder condition ‘Fowlers Syndrome’. A few weeks ago I had my trial of the device and I was amazed by how much it changed my bladder function. After 4 days I was almost pain free in my bladder and it was behaving like a ‘normal’ bladder. I even went catheter free for 10 days. If you have never had to insert single use catheters yourself multiple times a day you could not possibly understand how painful and inconvenient it is. The relief I had for those 2 weeks when the trial version was in was wonderful. The surgeon informed me that this device costs 15,000 pounds and I can tell you I could not possibly be more grateful for the NHS for the chance to get this surgery. After my trial my surgeon lost funding to provide this device to bladder patients, they managed to fix the issue within 2 weeks. I was devastated when I believed I may not get this surgery for a long time and this helped me to realise how much I wanted this surgery. I feel so lucky that I am getting it so quickly after waiting so long to get a doctor to take my bladder problems seriously in the first place.

There are a few drawbacks to living with this device inside me for the rest of my life, I will never be able to horse ride, skydive, play any contact sports or go skiing. None of these things will be a great loss to me if I’m honest, I wouldn’t be doing any of these activities anyway. The things that will affect me are the fact that I can never have an MRI scan again, I have needed many MRI scans in the last 10 years so not being able to have one may make it harder to get treatment for some joint problems. I will also have to wear a medical alert bracelet every day to ensure medical professionals are aware of this in case I am ever admitted to hospital and cannot tell them I have the device inside me. The device is known to set of security alarms in airports and more embarrassingly I imagine, in shops. You need to carry a card which states you have the device implanted so you’re not accused of shoplifting every time you walk out of Asda with your weekly shop. Nearby household items like fridges which have magnets can cause shocks through the lead inside your body which sounds like a super exciting way to go through life. I might get a painful shock every time I get the milk out of the fridge for my cuppa. Hmmmm considering the number of cups of tea I drink a day it maybe best not to think about the chance of that happening too much.

I weighed all of this up for a while, the positives do outweigh all the negatives and possible side effects. So, from Monday all being well I can get one very important change to my life living with Ehlers Danlos Syndrome and the complications and chronic pain it causes. I’m excited, hopeful and very nervous all at the same time. If I think too much about all the complications and surgeries I have had in the last few years it makes me feel very concerned for Robyn and Lewis and their future with this condition. I have decided to look at it in a different light, in the way that I am trialling all of these surgeries and devices that they may need in the future and it will make me more able to comfort them and understand what they go through if they ever do need any of these. So, I’m going to spend my weekend nervously and excitedly looking forward to Monday, see you all on the other side. 🙂

Feeling the Fear Decrease

Family, Gender, Transgender, Uncategorized

For almost 3 years I have spent so much of my time worrying about what people think in regards to Robyn and her choice to live as a girl. I have struggled harder than I could explain to anyone with the fear of judgment and blame. I have always been supportive of her and understood that this is who she is and that she hasn’t changed, she is still my funny little child. She is still Robyn through and through, she still loves Dr Who and being bossy. I never felt like some parents do that I had lost my son, I didnt feel like I gained a daughter either because Robyn was still Robyn. All I ever felt was fear, fear of other peoples reactions, fear of her future just worry after worry.

Yesterday something happened, I sat in a school assembly and watched Robyn get an award for her huge improvement in English. She has been behind in education her entire life due to Dyspraxia, she has always worked extrememly hard and never given up when she found things difficult. Yesterday I was told she has passed a mock SATS exam in reading. This is huge, 6 months ago we didn’t think she would even take her SATS exams as she was expected to fail them. Since moving school and feeling more accepted and comfortable she has made huge leaps in her education. I am happy to know I made the right decision for her when she asked to move schools.

This was a lightbulb moment for me, maybe this is what she needed all along. She is thriving so much more now she is confortable in her gender expression. So I felt a sense of peace with the fear, I know it will still be there and I will always worry about her future as a transgender person but I am choosing not to worry as much about what other people think. Watching your child thrive is all a parent could wish for, yesterday gave me a new attitude towards the fear of being judged and blamed.

All that matters is that she is happy and comfortable, when i look at her happy little face it reminds me we are doing the right thing. How can making your child happy be wrong. How can letting her feel comfortable in the skin she is in be a bad thing. I will balance my fear against her happiness and I know which one will always come out on top from now on.

 

 

Decisions, Decisions, Decisions.

disability

Life throws me curveballs all the time and Im proud to say most of the time I step up and do what ever I need to do but lately it seems much harder, the pressure much heavier. I hate making decisions, being a grown up is hard at times.

I had thumb joint fusion surgery in November and the surgeon believes I am allergic to the metal in the plate or screws they have put inside me. This means having another surgery to remove the metal sometime in the next few months and hope that the bones are fused enough without the metal. The idea of going through the surgery again frustrates me hugely it has been painful and frustrating. The problem is that I am due to have trial Sacral Neuromodualtion surgery in January before a permanent surgery to fit the permanant device in a few months. Now I am unsure if I will be allergic to the battery I will have implanted after the trial surgery in the permanant surgery. This is an example of what the surgery is.

sns

If I dont have this surgery I will have to use catheters for the rest of my life. I can have botox every 6 months but the risk is I will have to use more cathters than I do now. The best chance for me is Sacral Nerve Stimulation it has a 70% success rate and has been a miracle for some people.

I don’t want to have to take these kind of decisions, I have held on to this surgery as the best possible solution to the painful spasms I have everyday in my bladder and the end of having to use catheters every day. My future without this surgery is bladder incontinence, constant bladder infections, possible kidney damage, pain and a permanant catheter. So yes I want this surgery, I want to give this a chance. So I am trying to decide whether to risk having another piece of metal implanted into my body that I could be allergic to. It’s a risk but the rewards could be amazing, I wish someone could make this decision for me . I wish I could pass the choices on to someone else and let them take responsibility for whatever happens.

Because knowing you will only have yourself to blame if something goes wrong is a feeling that sucks! But doing nothing and wondering if you passed up a chance to make things better sucks too.

I want to be free of the feeling of anxiety that comes with making these choices, its not going to happen though. So I’m going to make the choice and be responsible for whatever the outcome is because if there is a chance I can be better even a small one then I have to give it serious consideration. Like I said being a grown up is hard and this is a decision I have to make alone, with support but still alone.

The Blame Game

Family, Gender, Transgender

A lot of our lives seem to revolve around blame, we blame others for things that have gone wrong and we blame ourselves for things that we may or may not be to blame for. I have spent of the last 11 feeling to blame for the kid’s health problems and for the lack of time spent with Elliot because of spending time in the hospital with the little two or looking after them when they have been ill. I spent a lot of time feeling guilty and blaming myself for not being able to share my time more equally.
In recent years I have found myself being blamed for Robyn’s transition and I don’t feel that was fair. I in no way encouraged or wanted my child to be transgender, I am to blame for loving her and supporting her and I do not feel that is a bad thing. I will not be made feel guilty for supporting my child in living the way she believes is right for her. As a parent you live most of your life feeling guilty for one thing or another and I believe that’s true for every parent. You spend each day trying to be the best parent you can be and I don’t think we remember that doing our best is good enough.
I am angry, really angry in fact that I have been blamed for Robyn being Transgender. I am angry that anyone could believe I would try to psychologically abuse my child, to push her into what can be a very difficult life. That there are people who believe I am such a terrible person and parent hurts me more than you can imagine. To know there are people who have talked about me behind my back and decided that by supporting my child I must be the reason she has taken this path is hurtful. I love all my children so much and would never do something like that, but I know it’s easier to blame me than accept that Robyn knows her own mind and has made the bravest decision I have ever known a child make. Yes she was young and yes it was a huge decision but I trusted her and I believed that she knew her own mind.
I didn’t do this blindly, I sought advice and support, I got referrals to the correct services but that didn’t matter to some people. So yes this is about blame I am to blame for many things but not for this. I didn’t make my child transgender and I didn’t do anything wrong when I supported her. Look at her 2 and a half years later, look at how happy she is how confident in her decision to live her life as a female. She knows she is supported and she knows if she ever changed her mind I will support her in her decisions. How can I be a good parent and ignore what she truly believes she should be, how can I not defend her right to be happy in her body and how she lives her life.
I’m not saying I haven’t made mistakes god I have made plenty but I love my kids when I think about how much I love them it actually hurts in my chest. So in the face of being blamed I’ll still support all three of them in whatever they choose to do and however much I may be judged for it because they are my priority and they mean more to me than anyone or anything else in the world. They are the best thing I have ever done in my life, so if people need to blame me for something instead of being able to accept that a young child can know that they are meant to live a certain way then that’s fine. I would take any amount of blame and amount of talking behind my back to support my children because that’s what you do when you love someone.

blame

What Makes Me A Woman?

Family, Gender, Transgender, ,

I was watching a documentary called What Makes A Woman. It got me thinking about why I believe I am a woman, am I woman because I have breasts and a vagina? It was the first time I had thought about it and realised that those body parts are nothing to do with why I feel like a woman. My brain or maybe my consciousness of who I am is what tells me I am a woman. If this is true then biology and my physical form are irrelevant. I believe I am a woman because I feel like I am a woman not because of the genitals I was born with. If I woke up tomorrow with a penis I wouldn’t suddenly feel like a male. If I grew a beard or no longer had breasts I wouldn’t believe I wasn’t a woman. I can honestly say I have never thought about this before which surprises me as I have a transgender child.

I think it’s possible for many of us that our gender is such an ingrained notion that we never question as to why we feel we are male or female. We just are.
So why is it such a stretch to believe that a person could have the biology of a gender but the brain of another?  If you know so deep down inside yourself that you are a female or a male and having a different sexual organ wouldn’t change how you feel about your gender why is it so difficult to understand that you could have a penis but know you are a woman or vice versa? I have never and will never judge anyone for not understanding it but if you have never thought about gender in that way just for a second think about why you believe you are the gender you are. If you woke up tomorrow with a different sexual organ would it change how you saw your own gender? I don’t believe for the vast majority of us it would.

I feel like a lot of the time I have felt alone with worrying about Robyn’s future because I didn’t know or speak to anyone about who understood, then I got back in touch with Mermaids who are a charity who work with transgender children and their families. I met other families a few weeks ago who understand my fears and also have no judgement on the life Robyn is living. I don’t have to be worried around them about how they might react if they knew about Robyn or be afraid someone there will be cruel to her, everyone there understands and is compassionate and supportive.  So I thought maybe its time to learn a bit more about what might happen for her in the future to be prepared. So this led me to today I went to an amazing bookshop in a lovely village with a friend, I found two books about being transgender in the children and young adults section. I think this shows how much the need for this kind of literature is out there in the world. I bought a book aimed at teens who are transgender and decided to read it then save it for Robyn when she is old enough to need to need or want the information it contains.

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I spend a hell of a lot of time worrying about the future for Robyn but I think the more society learns from literature like this and from other avenues the more tolerant society can be of all transgender people whether they are children or adults. I hope after seeing that information is out there that this means in the years to come my daughter will be able to live the life she wants without fear of persecution from others. All I want is for her to be happy that is all I want for all my children.

September The Only Month I Truly Hate.

bereavement, Family, ,

This month is always hard for me so I have been employing some distraction techniques to keep me busy especially when the kids aren’t here. September is my least favourite month, well that’s putting it mildly actually I hate it. September is ‘the’ anniversary month, the anniversary of a day absolutely no one ever wants to celebrate. And I mean no one and I mean never. So September for me is a lot about distraction and a lot about being sad and wondering what should have been. In 14 years I have yet to find a better way to deal with September so I continue to distract myself. The problem is that each day has this habit of turning into the next day and then we get closer to D day and it takes superhuman strength to be distracted on those days. The last two days I have spent hours cleaning and baking to make sure I don’t have time alone to think. But then as always at night there is no more distracting you can do and you can’t help but think of all the things you have been avoiding thinking about.

So here it comes, tomorrow I have no choice but face the day regardless of how much I want to hide. Tomorrow I should have a 14 year old teenage son to spoil, a 14 year old to marvel at how much he has grown and how it feels like only yesterday he was a tiny baby. To think of all the memories we have made and all the other cliches we all know and love about our children growing up. I should be moaning about picking up his dirty socks and complaining about how he eats me out of house and home. Tomorrow like the last 14 years I will have none of those things, not one bit of it. All I have is a memory of you kicking me from the inside and the brief time I got to hold you and stroke your baby soft skin. It wasnt enough, nowhere near enough and even after 14 years it still eats me up that your not here. I can’t begin to describe how much I wish I could change things for you, the things I wish I could have done with you. I can’t pretend i wouldn’t be changing them for selfish reasons aswell.

There is no time limit it appears on grief, I’m still angry and I’m still broken from your death. I was pregnant for 8 months and I had a baby but I didn’t feel like a mother. I felt for a very long time that I failed you, like somehow I should have protected you but I didn’t. I know now that’s not true, I did my very best and I did protect you, I loved you and I made plans for you like a mother does. It sometimes feels like as a parent you spend a lot of time feeling guilty for the things you get wrong and feeling worried about what will happen to your children. That’s how I know that I did become a mother even though you weren’t here. I worried about what was going to happen to you and I worried if I made the right choices, I was a mother because I felt like every other mother feels when they have a child.

So tomorrow we will light some candles for your birthday and your siblings will blow them out and we will talk about you, I will answer their questions about you that always come and it will hurt but I will be so glad as always that they think about their biggest brother. I will bring you some flowers and talk to you, I will no doubt cry at some point and that’s fine, I will cry because I wish you were here to celebrate your birthday and because I’m your mum and mum’s do embarrassing things like cry on their son’s birthday.

And although I will always feel broken that you’re not here I’m glad it still hurts in some ways because it’s when it hurts the most that I feel closest to you and I wouldn’t want to ever stop feeling that. I’ll try to see it from different perspectives, I know that without having and losing you I may have been a very different person. I know that your death made me appreciate many little things that I may not have when I had your siblings, it makes me more empathetic to others who experience loss and above all having you made me a mother and I wouldn’t take that away.

 

 

 

 

It’s been a while!

Family, ,

So I haven’t written in a while and I think that a lot of that has been because I couldn’t find the words to say what I wanted to say.  I spent a chunk of that time in a situation which made me extremely unhappy but I didn’t know how to escape from it.  Life has now changed dramatically but definitely for the better.  So the big updates (drum roll please), I met an amazing man who makes me incredibly happy (nauseating?). I have wonderful friends and family who have been an amazing support in the last year or so when I needed them most. I am now a divorcee and have had to get used to co parenting the kids with their dad. Sharing the time with your children with another parent can be both difficult and enjoyable in some respects. Having some free time is no bad thing but missing your children is not an easy thing to cope with. Co parenting is not something I ever wanted to do, in fact it was something I would have and did do a lot to avoid.

Being mature and amicable after separation isn’t always easy as any separated parent will tell you but we do it for the children’s sake and we seem to have fallen into a pattern that works mostly. I want my children to know that they come first and that we can put aside what has happened in the past to be good parents no matter what we think about each other.

So onto this year, I have had a lot of adventures this year and done things I would never have had the chance to do before which has been amazing. I have done a lot of ‘firsts’ this year, me and Steve went on holiday to Loch Ness in Scotland and we both loved the amazing scenery. We managed to see a wild dolphin on a boat trip in Inverness which is something I have always wanted to do.  We made the long trek (in a car obviously) to John O’Groats (and took the obligatory selfie) another thing on my wish list.

me and steve john o groats

We also went on our first holiday as a family with Steve to St Ives in Cornwall and although I don’t suggest a 7 hour+ drive to anyone with kids we had some amazing day trips and the kids had a lot of fun. I was so happy to get such a long period of time with the kids and to see them have fun getting to feed baby animals and go swimming in the gorgeous sparkly Cornwall sea. The kids have had a lot of changes to get used to in the last year so it was brilliant to see them so carefree.

 

cornwall

So now things have come to a calm point in our house for the kids, they are all settled in school and about to start back for another year. They have been amazing coping with everything that has happened and I look forward to getting on with life without any major life changes for them in our home. Although it has been difficult in some parts this last year or so has taught me a lot and also given me a lot. I am very lucky to be in a very loving relationship and to get to have our little adventures and be spontaneous, to have someone love you and see past your flaws and your disability is a beautiful thing and I couldn’t be more thankful.

 

 

Very late resolutions. 

Uncategorized

Life is anything but normal but i haven’t felt the need to write about it much. Having lots of tests at the hospital at the moment but not worried about it anymore. My bladder looks healthy and I’m starting some medication to hopefully help some of the problems with it. Kids are all happy and trying hard at school, what more can we ask for from them (other than to stop fighting, whinging, moaning and generally being a pain in the arse). There is the referral going through for Robin to Tavistock who deal with gender dysphoria in children so that’s all in motion. Not many hospital appointments for the kids. New paediatrician is fantastic so everything gets done without me chasing it up which is great.

If things are so settled or as settled as it gets in this house I wish I knew why I felt so unsettled. I feel as though I’m waiting for the other shoe to drop. It’s disconcerting to have things so in order and to still feel such a lack of control, maybe life is so often more stressful than this that my brain hasn’t caught up yet. Life can stay this way though if that suits the universe’s plans I don’t mind a bit of semi normality. So I guess I don’t know what I’m writing for really, no news to impart, no new information for me to try to understand by writing it down. I think it’s become habit now to write when I’m thinking.

I woke up early today to lots of snoring going on in the house, some rather cute and some more sort of house shaking. I went round the rooms checking on everyone, there is something beautiful about being the only one awake and getting to sneak into the kids rooms and watch them sleep with the sunrise coming through the windows. That is until they stir and you exit the room as fast as you can offering sacrifices to the gods so they don’t wake up yet. Sometimes you need a little reminder that life, time and things you will want to remember are going by while your spending time worrying and planning. 

Relax more, look around and press the pause button that should have been my new years resolution. Ah well it’s never too late to start is it. 

Painkillers and apologies 

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I made a choice a few weeks ago to stop taking Tramadol which is a fairly strong addictive opiate. I stopped cold turkey and was fine other than in increasingly hard to manage pain. I was then put on Gabapentin which is not an opiate and helps with nerve pain. These painkillers do not help as much as the Tramadol did but they are less addictive which I am much more comfortable with.

Flip side of this is I have had such an increase in pain or at least my awareness of pain recently. My bladder is contributing to a lot of that pain and hopefully the new painkillers will help with some of that. I can see that some of my internal organs are becoming more and more affected by my Ehlers Danlos Syndrome and I am increasingly aware of how much more limited I am and how much I am hating losing my independence and my confidence. I hate going anywhere alone now and feel anxious a lot of the time.

I intend to ask for help with feeling like this, I have noticed I am much more bad tempered recently and I am guessing this is due to the increase in pain and medication changes. If I have been short or grumpy with you I apologise. I am working very hard on not feeling like a burden and keep telling myself I am still useful and worth something. This is raw honest truth, at the moment I struggle to feel like a proper mother and it’s hard hard pill to swallow (and I swallow a lot of pills a day).

I remind myself daily this feeling is temporary and that I am wanted and needed. I don’t need anything from anyone I just want to say sorry if I’m not my usual self. I just need a bit of time to accept the things that are happening to me. To accept I can’t change most of these things and to figure out where to go from here.( just realised it’starting to sound like the 12 steps here).

I even recently had so much more independence. I was volunteering a lot, planning for the future and feeling more confident. That’s all gone now, I barely volunteer anymore, I dont feel i can plan much in case my bladder gets worse or I’m in too much pain. My plans keep changing and I’m not adapting fast enough and I’m not happy, I so want to be. I want to accept my life as it is and stop being so bloody ungrateful for what I do have. Stop thinking about what I’m losing and look at all I have got. I wish it was that easy.

So I guess I’m saying sorry, I’m probably very self centered and tetchy lately and I might be for a while yet. I’ll be fine soon as I always am so just give me some time and some understanding.