Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Sunday, 21 March 2010

What is EDS? (My disability)

Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

Please note: Some links may have been disabled as it is a quoted extract which copyrights all belong to the reference link above and at the bottom, all rights reserved to original copyright proprietor.



"Reviewed May 2006

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues,
which are tissues that support the skin, bones, blood vessels, and other organs.
Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome,
which vary from mildly loose joints to life-threatening complications.

In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome.
In 1997, researchers proposed a simpler classification that reduced the number of major types to six and
gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type,
the hypermobility type, the kyphoscoliosis type, and the vascular type.
Other forms of the condition may exist, but they have been reported only in single families or are not well characterized.

Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type.
An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome,
particularly the hypermobility type. Infants with hypermobile joints often appear to have weak muscle tone, which can
delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone
to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in
infants with the arthrochalasia type of Ehlers-Danlos syndrome.

Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile.
Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring.
People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with
little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars.

The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles.
Extra (redundant) folds of skin may be present as affected children get older.
Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve
serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably,
causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated
with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb)
during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe,
progressive curvature of the spine that can interfere with breathing.

How common is Ehlers-Danlos syndrome?

Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, t
he combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide.
The hypermobility and classic forms are most common; the hypermobility type may affect as many as
1 in 10,000 to 15,000 people, while the classic type probably occurs in 1 in 20,000 to 40,000 people.

Other forms of Ehlers-Danlos syndrome are very rare. About 30 cases of the arthrochalasia type
and fewer than 60 cases of the kyphoscoliosis type have been reported worldwide. About a dozen
infants and children with the dermatosparaxis type have been described.
The vascular type is also rare; estimates vary widely, but the condition may affect about 1 in 250,000 people.

What genes are related to Ehlers-Danlos syndrome?

Mutations in the ADAMTS2COL1A1COL1A2COL3A1COL5A1
COL5A2PLOD1, and TNXBgenes cause Ehlers-Danlos syndrome.

Some of these genes (COL1A1, COL1A2, COL3A1, COL5A1, and COL5A2) provide
instructions for making proteins that are used to assemble different types of collagen.

Collagens are molecules that give structure and strength to connective tissues throughout the body.
Other genes (ADAMTS2, PLOD1, and TNXB) provide instructions for making proteins that process or interact
with collagen. Mutations that cause the different forms of Ehlers-Danlos syndrome disrupt the structure, production,
or processing of collagen, preventing these molecules from being assembled properly. These defects weaken
connective tissues in the skin, bones, and other parts of the body, resulting in the characteristic features of this condition.
Read more about the ADAMTS2COL1A1COL1A2COL3A1COL5A1COL5A2PLOD1, and TNXBgenes.

How do people inherit Ehlers-Danlos syndrome?

The inheritance pattern of Ehlers-Danlos syndrome varies by type. The arthrochalasia, classic,
hypermobility, and vascular forms of the disorder usually have an autosomal dominant pattern of
inheritance. Autosomal dominant inheritance means that one copy of the altered gene in each cell
is sufficient to cause the disorder. In some cases, an affected person inherits the mutation from one affected
parent. Other cases result from new (sporadic) gene mutations.

These cases occur in people with no history of the disorder in their family.
The dermatosparaxis and kyphoscoliosis types of Ehlers-Danlos syndrome,
and some cases of the classic and hypermobility forms, are inherited in an autosomal recessive pattern.
In autosomal recessive inheritance, two copies of the gene in each cell are altered. Most often,
the parents of an individual with an autosomal recessive disorder are carriers of one copy of the
altered gene but do not show signs and symptoms of the disorder.

Where can I find information about treatment for Ehlers-Danlos syndrome?

These resources address the management of Ehlers-Danlos syndrome and may include treatment providers.
You might also find information on treatment of Ehlers-Danlos syndrome in 

Where can I find additional information about Ehlers-Danlos syndrome?

You may find the following resources about Ehlers-Danlos syndrome helpful. 
These materials are written for the general public.
You may also be interested in these resources, which are designed for healthcare professionals and researchers.

What other names do people use for Ehlers-Danlos syndrome?

  • EDS
  • Ehlers Danlos disease

What if I still have specific questions about Ehlers-Danlos syndrome?

Where can I find general information about genetic conditions?

The Handbook provides basic information about genetics in clear language.
These links provide additional genetics resources that may be useful.

What glossary definitions help with understanding Ehlers-Danlos syndrome?

You may find definitions for these and many other terms in the Genetics Home Reference Glossary.
References (14 links)

The resources on this site should not be used as a substitute for professional medical care or advice.
Users seeking information about a personal genetic disease, syndrome, or condition should consult
with a qualified healthcare professional. See How can I find a genetics professional in my area? in the Handbook.
Reviewed: May 2006
Published: March 14, 2010"



Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

Everything in my life hurts!

http://www.youtube.com/watch?v=3LhNHSVSJDA


The above is a link to a video about my EDS, Ehlers Danos Syndrome, this is part of Hypermobility Syndrome.


Please watch.

Saturday, 20 March 2010

.. have just fallen.

Well, I was OK,


I have just fallen, and really hurt myself, severely, and I am on sooo much meds already.


My husband was taking a shower as I was on this laptop sat on the settee and the baby was fast asleep in his cotbed, and he wasn't going to be long.


My mobile rang, I tried to do what I get help with, but due the lack of promised GRAB RAILS I fell over, knocked a stool over, nearly broke my plaster hand jewellery holder that I am painting and was a present from my husband, and I grabbed onto the bed (all this is short distances away from each other as we are forced to live in our living room still. I used the bed to pull myself up from the floor and grabbed my phone which was on charge on the other side of the bed where the sockets are.


It was my grandma, my great. grandad whom i love sooo much and really care about is still really ill, having been in and out of hospital I don't know if he is out right now or not, she was trying to phone my Auntie instead, she asked after baby and i briefly spoke to her as she had to go.


Husband came down and helped with everything else.


I am so fed up of hurting myself in doors and NO RAMPS for me to use my scooter to drive out, so I fall or hurt myself stepping out of the house (little step as opposed to stairs) and I shuffle out but it hurts sooo much!


When will we get the ramps and grabrails THEY HAVE nothing to do with the getting of the stairlift so I can understand the bath lift being postponed but these could be placed BEFORE the stairlift, which I get ANOTHER assessment for it by the SAME O.T. in APRIL!!!!


The only difference being is a gentlemen from a specific company is coming to assess.


I am fed up of them making this about baby too as they are being ridiculous now, they say our baby is in danger being near the stairlift and we cannot but a safety gate at the bottom or top of the stairs.


I say solution is easy, we are good parents, we are not stupid, I have serious qualifications and OH remember that assessment from child social services themselves???


We put the baby gate in the corridor and we watch the baby upstairs and have safety devices in place for every room, there are doors on the rooms and simple things like putting handles upside down can be done.


NON-Disabled parents/single parents would face same issues, as stairs alone are dangerous incase falls happen.


So why attempt to stop me from getting a stairlift with stupid IFS about our son??


They say that he needs a little rail as children need to be independent and be able to climb the stairs on his own, YET they are pushing us to still have a bungalow,


OK, so lets talk about baby, there are NO STAIRS in  a bungalow so how is he going to be independent?


From what they say about bungalows anyway as you can watch babies easier, that would mean all single parents would be bad parents unless they had a bungalow and that makes no sense.


Right now he is near ducks, swans, a lake, geese and a shop and a school and families with young children, with easy walking distance to the town. With 5mins away distance to his surestart centre, twinkle times every friday, they want to stop him having access to that? Where all child services occur?


They want to change that so he is in a society full of elderly people? Possibly away from town, definitely not near a school or the lake, and we are near the school i went to as a child and would like him to go there.


They are ignoring other things too, like the fact we have friends and family around here, near the surestart centre as already stated. We have bills to pay from moving in, the BT charge for putting a landline in, £122.50, still owed, the amount to pay as SKY services lady cancelled our sky talk without my permission then hung up on me so i had to phone and they said NOTHING was cancelled, so BT has took £80+ from us as they covered the few months instead, when we thought we had free calls.


BT still hasnt sent us the itemised call list to send to SKY to claim that back, plus issues we have had with gas and electric an change of address??


Royal mail charge PER name!! So we would need 3 name changes, my husbands, mine, my businesses, actually 4 now as some send things to Baby for some reason in his name....


And we would have to notify several places/people including carers associations allsorts.


I cannot cope moving anyway as I cannot do what i could before, and its hard to even pack, and we have bought decorating wallpaper and things for this house now too.


PLUS several hundred other reasons that WE CANNOT move, we dont want to move, we cant cope moving....






YET they keep making us out to be bad parents by making up actions we would never do that would put our son at risk in association with the adaptations we have been promised.


Its ridicuous, and we are sick of it.


If it continues we will be forced to look into changing our O.T. she is the same one that ignored all my needs, wrote what was NOT happening (false information) and harrassed me so much to sign it, I kept saying NO.


She then asked again over the phone hundreds time too before, I said NO, and explained facts in regards to my disability and explained that at that time I was suicidal and i want to be taken seriously and the documents lie as they say I can do things I can not do so by signing them it will make my life more difficult and worse as its all false!


She said the commode could be a life long solution to not having a toilet, she said i could have a bed bath or strip wash (cannot do that due to positioning and immobility) cannot wash my hair at all!


She said lots of other things, so after i sobbed down the phone to her, will call her C.S. she just said will talk about that when i see you tomorrow.


She came over with another person NEVER talked about any of that and tried to force me to sign it again, and having explained to her all the facts that contradicted everything she had said, she said to me, which cut me up to the extent my head got heavy and i had an adrenaline rush and wanted to scream and cry, she said well which bits do you disagree with.


disagree with??


I had proven it was all false, i never disagreed, i was explaining FACTS!! Then she scribbled on one of the sentences of many, she spent an hour atleast trying to get me to sign it.


I did not.


She was also the only one that brought up me seeing the psychiatrist and i assume she was trying to use that to prevent me from getting services as thats all she tried to do all meeting, and i stated the truth, its not psychosomatic, i even told him i was suicidal and he did NOT want to see me again, her amazing answer was, oh.


I NEED help, i need these adaptations and C.S is still saying i may NOT GET a STAIR LIFT even now. I am sick of this. She keeps saying i am going to get better and insulted the specialists at hypermobility.org as they told me i had the EDS version of Hypermobility syndrome, but how dare they?


They obviously know nothing about Hypermobility syndrome, there is NO CURE, if i get better it will only be for short periods of time, even if i managed to walk the stairs I WILL ALWAYS need THE STAIR LIFT as there will be periods of time for the rest of my life that I could get stuck upstairs without the stair lift and be immobile and severely disabled again, i have it severely.


They have awarded me a stair lift TEMPORARILY and I can see coming, that if i have a good patch, the will remove the stair lift, then when i am having a bad patch again, i will have to re fight for one as i can see myself stuck upstairs, not being able to attend anywhere.


They have no idea about HMS they say the hypermobility.org specialists are not trained, not doctors, and dont and cannot assess me individually and that i need a individual assessment and that i will get better.


After all that THEY SAY I WILL GET BETTER so... what experience do THEY HAVE to state such things, when slating people who KNOW MORE than them about it as some people in hypermobility.org HAVE HMS!!!


It is ridiculous!


We are just putting up with it all so I can get the adaptations I need, but they are NOT coming FAST!


I STILL HAVE NO COPY OF MINUTES, NO CARE PLAN, NOTHING I WAS PROMISED FROM MEETING!


*Sighs*

Well atleast I made it to being a mam! But...disabled for life too? It was all worth it!






Well atleast I made it to being a Mam, but disabled for life too? It was all worth it.


I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome.


I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours...


I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily.
Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse.


Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centre's twinkle time every friday and he loves it!


His dad, mu husband (and 24/7 carer) but more loving husband and loving father, adores him, he helps us sooo much so we live as much of a normal life we can until we get the much needed adaptation help we have been promised by social services and are still waiting for.


My husband and my son are my life, and once we get the adaptations, we can have routine and normality as the disability wont pose as a problem as we will never again be reminded of it by the problems we have without the adaptations daily.


So our life can be normal and we can have a good quality of life, but we are having to wait such a long time for the help, they shouldnt be postponing the ramps and grab rails until i get the stair lift as they are postponing the bath lift but that one makes sense, but i need the ramps and rails now!


Will be phoning to try and sort things this upcoming week as we cannot get any help on a saturday, only from carelink in an emergency and carelink are fantastic!!! FANTASTIC!


Much love to everyone/anyone who is reading this and if you suddenly develop SPD, get it looked into, do not be fobbed off by them saying it is psychosomatic without any psyciatry experience nor any grounds or professional assesments to go on, as i never had any help i was supposed to have as outlined by the NHS in the book given to first time mothers and on the internet.


We have suffered enough, we are making our life as good as it can be until we get the much needed adaptations.


My hubby treat me to a new wedding ring and it is beautiful, it says Love Forever and everytime i look at it i read that and feel happy.


We are loving this and cannot wait to grow old together, so many good memories to come, i know there is always bad right now we share, but we prefer the good as would anyone and we cannot wait to be old and sitting still strong, speaking of the good memories we have shared.


Love is bliss.


The other gorgeous treats I have now from my husband, to cheer me up and replace the wedding ring and engagement rings i had before that do not fit me anymore.


 (I gave them away to a dear friend as a present as she is one of my bestest friends and i love her like a sister). 


Here are images of them, the wedding ring image is at the top of this blog.






My new cluster 15pt diamond engagement ring, I have never had diamonds before and this is such a surprise and is gorgeous, I feel so blessed.
















This is my new Wedding Ring and it says LOVE FOREVER and everytime I look at it I know how lucky I am to be loved by my soulmate, the one person in the world that makes everything feel alright and safe with just one hug, the wrapping of his arms around me, snug, and safe, and warm, and protected.


The man who has dedicated his life to being my 24/7 carer to make my life easier, I owe him the world. I love him so much. He and my son are my life.






My 'MUM" ring, now I know I prefer MAM to MUM, as that is the word I have always known, but I accepted MUM in this instance as this ring is the most beautiful symbol that I can wear with pride, to remind me of my motherly love, at the worst of times, when I am in hospital without him, this represents the love my son has for me and I have for him. 


I have had a miracle occur, and that is my son, I have had a child. All those mothers day, passing, me sitting there sometimes in tears, sobbing, wondering when I can make a life with the person I love, the emptness was so huge and for so long, I waited, the quietness, I would stare around the house and imagine a little child, girl or boy with a huge grin, running about and playing, and wondering when I could have a child to share mothers day with, and a fathers day for my husband.


I finally had my first mothers day and we painted his footsies and have prints now, some show his skin creases and everything on silk like white fabric in black fabric paint and the others are on paper, yellow feet and some green feet lol then we did our hands, my right hand, husbands left hand, and baby's hands in the middle and two of them, second he scrunched his hand and the paints curly and its lovely.


It was one of the top days of my life and will stay with my wedding, engagement and the birth of our son, in our hearts.












My husband also bought me some really nice earrings to spoil me, it was a great day. 


I have a choice from alternative styled earrings that are totally me and some other hearts, stars, and pink diamonte styled studs too, so in total I have 7 sets, and it's nice to finally have the choice.






These are the others I was talking about.


Thank you for letting me share all of this with you and when I was in the store on the scooter I bought myself I felt like a princess choosing all these lovely things, we got the baby a baby's play gym too, so we can play with other things whilst being stuck at home in the living room.






We are just trying to focus away from the negativity and stress occuring in our life, and although we are struggling through still we have each other and it has been really nice to focus more on each other and stop the stress interfering as when we are stressed and  not coping well, in all honesty, we dont like how we are, and who we turn into, miserable and stressed individuals, so we have put a stop to it and stopped caring right now about anything other than what makes us happy.






In all fairness so much has been happening and causing misery to our life, although we had hope since we were awarded the adaptations, we are still NO further forward and feel let down, so we are focusing on each other.

Life can be good.

We just wish that they would do the ramps and grab rails now so we can stop being reminded of my disability so much and I am being forced to do things that are hurting me and making me poolie/ill. severely ill/poolie.

We need help.