Wednesday, 24 November 2010
Some people advise speaking to people older than them about SPD but it really does not matter who you speak to about it as long as they understand it or have experienced it themselves.
I spoke to a retired midwife when i became disabled with my joint condition which caused the spd and i have it and diastasis permanent now, she just said the same as everyone else to be honest, SPD was there even BC she said she had read one of the philosophers actually mentioned it too, and her advice was the same as all the advisors and pelvic partnership.
Unfortunately you pretty much just have to try and live your life with it as best as you can, with the right pain relief and help you deserve.
Im on pain relief and have my wheelchair as im severely mobility impaired now and I still need my stairlift, (for readers who maybe new to the blog) but I have been like this for 2 years and im 23 years old now.
Why I started my support group?
I created the group so women of all ages can talk to women of all experiences including the variations of time they have had the condition and i feel this is the best way.
We have a discussions section for personal stories and blogs, i have a blog which merges with a huge information section of all the links you need if your new to SPD or need help with dr's or even coping with it if long term sufferer.
I advise people to create blogs and share them, it really helps to find someone who understands you and what your going through as opposed to someone who has merely observed the condition clinically through said career paths.
There is more than whats needed of info on this blogspot site and i cannot emphasise how important it is to help us raise awareness of SPD and that starts here, by you inviting every person you can on facebook to the support group on facebook and linking them to follow this blog so more people can find that we are here to help people with SPD and there will be many women suffering in silence right now, so we need to act NOW to see that the people that need the help get it and the people that do not know about SPD find out about it, remember 1 in 4 women get SPD and 20% get it severely.
There is one thing i really detest and thats staff in the medical profession's ignoring SPD, read what i have been through then you will understand.
I am there as an officer on my facebook support group if anyone needs to talk or ask questions, or just for general support, its what i have dedicated my life to doing now, I am dedicated to the group and helping as many SPD sufferers as I can, my support group's my life and i will do anything i can and go all the way to help anyone who needs me further :)
I would like to emphasise the importance of letting people know this blogspot site exists, so they can learn about SPD and have access to all the information and research I have found continuously since I became an SPD sufferer and can choose to access the support group if they would like to.
Baby's 1st Birthday
I am pleased to say that baby has had a wonderful birthday we did everything we possibly could have for him and he was extremely excited and well behaved. We are so proud.
He even ripped the paper off his presents, but got frustrated when we had to switch to another present as he wanted to play with the first so much but my mam was getting it out of its packaging. We had a mini cake for him to blow the candles out, and a Thomas the tank engine cake so everyone could have a piece.
He got a range of surprises and he loves the Tomy eggs and his Trucks and his Winnie the pooh Spintop ball the most, but we also got him some children's drums and play instruments which he had a field day with!!
It was really nice to have a day like this and i cried happy tears upon going to bed, it was just simply wonderful!
He is walking so much more now, and doing so fantastic, he is speaking clearer and there are a few words being repeated now and I cannot put it into words how I feel, amazing!
He is our miracle baby and it still has not fully sank in that I am finally a mother, although I know I am a mother, it still surprises me everyday, if you know what I mean.
I am really happy at the moment which makes a big change and i feel lucky to have my husband also.
It is not easy for him, and he wants to be able to fix everything that goes wrong, and it hurts him when we are in situations where the healthcare are not treating me with respect or dignity and he does speak up and gets frustrated when they do not listen and just accuse him wrongly of arguing. Not going into specifics we have been through several situations of trauma and the counselling is really helping to vent it out and cry it out, jointly for both of us.
2 years is a long time to wait for such help but it is still appreciated. Our full story for those who are new to this blog, is all here on this blog site.
We have contacted my support worker to organise some more help, and we will find out how much we will have to pay after today, when they do the financial assessment.
That will give us the time we need, as we could not bear to put baby in a childcare situation, for personal reasons. He is very special to both of us and we would miss him.
We do have some family support on my side also so that as well as this help will help us to be more like a normal family.
We are getting there, we are all getting more and more into a routine and things are starting to get more easy for us, well we have my powered wheelchair now, and I still have my stairlift and bathroom adapted, which I thank my lucky stars for every second of every day it is just wonderful. We are starting to get back to normal, well as close to normal as we can get at this point.
We got so much more of the house sorted ourselves now and we are feeling much better for getting it done, although i wasnt a great deal of help, i did sit and organise through some things, and it did help husband which made me happy.
Although you can never get 'used' to a disability, it is getting easier.
All our love.
Posted by Private. This blogger has decided to set their name to private. at 10:20
Monday, 15 November 2010
I have just heard on the news that a little child has died from being dismissed and going back to the hospital I have been dealing with, from lack of diagnosis of a majorly recognisable condition without pain relief!
I have put a complaint into the same hospital about the lack of care and clinical negligence I received from / in the same department, thankfully I was not at a point in my life where I could have died, however as a disabled mother being left to fall off a high bed, having the pain relief of gas and air taken away and then being left on the floor, hit with the door and prodded (and much much worse all in a previous log/blog) and they did not care then, and they are pretending to care now by labelling themselves as having a high level of care 'usually'.
Instead of an apology they have made false and offensive allegations towards myself and my husband that will consistently affect the level of care every time I would need to go into hospital by writing abusive and offensive, false statements in their notes, claiming I have challenging behaviour, am deluded, am not disabled despite all evidence and diagnosis to justify otherwise, and that I apparantly should have my stairlift taken away and I have OCD. All lies.
I am actually quite concerned at the distress the family have now got to face due to this hospitals staff's constant negligence.
My sympathies lie with that family in particular and all other people who have been affected by this hospital which I am not going to name.
Instead I am putting a case together myself, to claim compensation and to prove my innocence in court so when i need to go into hospital again I will be safe and treat with care and respect, not deliberately abused nor physically hurt as I have experienced over and over the last 2 years starting February 2009.
This is disgusting and I urge all other people to step forward to put complaints in, and to take things further when the complaints system laughs at them and makes their situations worse and life threatening.
If I became seriously ill I could not trust the hospital, or any hospital who has my notes at this time, to treat me with the respect I deserve because they have falsely tainted my reputation and defamed me in my medical notes ; and with the way they act in regards to refusing treatment for smokers, how are they going to act when they read that I am allegedly (falsly I may add) abusive to staff and have no disability and a history of challenging behaviour, all lies. LIES!
Well i can answer that one easily, how they have been treating me after the allegations were made, ignoring me, refusing to use pat slides, and even getting a security guard in all the time leaving me to suffer all the more as opposed to getting the treatment anyone should deserve, afterall I am innocent and have only been a victim of their abuse.
Please help in my campaign to stamp out hospital negligence and abuse to vulnerable and all innocent patients!!!
Friday, 5 November 2010
Headache after headache:
Small reflect on the situation:
I am now in a wheelchair and I have an underlying joint condition ( a genuine disability ) that caused my spd during pregnancy, i am now disabled for life and its all still really raw for me because its only been 2 years that i have been disabled and i have just got a counsellor who is lovely and i have not had that, its wonderful, BUT its opened the box of problems up so im very sensitive right now.
Whats going on with my life:
I try to be as strong as I can be and i like everyone to believe i am a strong person but those that know me know deep down, i have such a big heart and because i care, things do bother me.
I am grieving a past life and some deaths of people i care about,
I am wanting to be a better mother and my baby is a year old nearly and we need to organise for his birthday, and i feel he is slipping away from me because he is into everything and pushing boundaries but i cannot say no to him like my husband can, he can go over and pick him up and say no. But i am stuck sat there and it reminds me of the early days again when he was in the moses basked crying and i couldnt pick him up, i was helpless, when he needed me. He needs me so much and I am trying to be there but it is still really hard when all your plans of things you would do as a mother has been stripped away from you as you have limited abilities. Very limited.
I know i need to be in control as opposed to the disability but at the moment, the disability is in control of me.
There is no one to blame for my disability because it was hereditory and my mother has it.
Underneath it all my husband and I (people forget he has gone through all of this as an onlooker) are both struggling to come to terms with the negative experiences of unfairness we both have experienced and more, and right now i cannot go to hospital because the notes wont be amended, and cut a long story short they dont believe im disabled (so i have to bring all my evidence) and as well as that, one abusive incident i experienced (all in a previous blog, i fell from a bed, they hit me with the door and prodded me) they lied to my dad and husband as true honest witnesses and said i was lashing out and had trashed the room etc but they both knew i had not and saw so. i was left on the floor that specific incident and i dont wish to go into too much detail as it is in all honesty so embarrassing for me.
All the incidents we are both dealing with here are very serious in nature, and we are terrified that we were not the 1st and wont be the last and many disabled people or spd sufferers are going through this!
Cut a long story short, if anything serious happened (life threatening) to me right now, i could not go into hospital because they would think im abusive and treat me bad or think i am not disabled and damage my pelvis or joints etc or let me fall and leave me, so we have looked into everything and the only option for us is to speak with a solicitor and take them to court to amend the notes so i can be treat with respect and properly like any disabled person/ young mother deserves.
And i am scared!
I dont want to do this, my husband who has dedicated his life to being my 24/7 carer and cares mostly for our baby too, wanted closure, as did i.
And they wont give it and they are leaving me in a very vulnerable position.
Nobody wants to take anybody to court and everyone wants an easy pleasant life, well we do and we assume most people would!
Sometimes i am thinking, end it all, give your husband and son a good life! Because the problems with others are all surrounding this disability which is beyond my control!
BEYOND MY CONTROL being the emphasis! :(
I am in need of some good coping mechanisms....
I need to cope better right now...
I am having problems with the DPN, (disabled parents network) the advocate wanted to close my case over and over and well i guess she has what she wanted now but its left us without help when i have recommended them to over 600 members of my support group and was planning a charity event to raise a lot of money for them and the advocate would not even let me talk to them, the only time they ever phoned me was this morning to tell me she had got what she wanted and when i tried to tell her the things i needed to before, when she was trying to close my case in the first place, she accused me of arguing so i cried said your mean and hung up.
So now i have to retract all my recommendations as they refuse to help us, she obviously doesnt like her job is what my husband said. personally i dont know but maybe she is over worked, but she should have listened to our needs and what we need and helped us.
I phoned up and spoke to a nicer lady who should be advocate because she wants to help people and understands disabled parents problems, and she will be getting the advocates manager to call me next week but im not expecting anything other than, shes closed your case.
yes i know thank you shes ignored our serious needs and left us in a vulnerable position, erm thanks??
As well as that:
Some one used my details to set up an IT account, and from past experiences, we have reason to believe it could be my ex, so it has been noted to the police and we will take action to anything that may happen at any time in future, of course we hope nothing will.
SO much stress
I am going to try and eat today and have a cup of tea, and i hope to God i dont cry later.
The one thing i do have is my support group and i am proud of a few people who have come forward to help me help people by becoming a point of contact as additional officers :)
Posted by Private. This blogger has decided to set their name to private. at 17:58