Re: Sabiha from lois

June 9, 2004

Hi sabiha,

your welcome.vickis RSD started from a bike accident she was biking stopped at the curb side and slipped off the bike ramming bike seat into tail bone.She walked the block home and said it was abit sore.About the wee small hours we heard her screaming and looked at her tailbone it was badly swollen. Went to our GP he said just badly bruised dont worry come back in amonth if no better, two days later vickis legs started changing coulor to a blusih mottly pink and she was unstable to walk.

Rang doctor just swelling from tailbone causing colour problems ring back in acouple of days.Wasnt happy took her to hospital and they xrayed it.Not broken but badly sprained and to rest for a week and heres apill to releif pain.Well she put up with it for a week, toliet became a problem she could squat.Bowel function was too painful.so that shut down.

went back to hospital, so two weeks from injury no ease of pain.Numbness inlegs.A othapeditic surgeon was innext cubicle and heard what was happening.He looked up her notes and next thing we knew we were flying to Christchurch for emergency MRI.He thought she might have bone cancer as she had had to tumors in the 8 years prior.

No cancer (YES!)

But it showed a closed mutiple fracture of tailbone.This is now 4 weeks from injury,he prescribe anit inflatmitries water phsyio and donut ring and no bike riding.Things improved alittle 10 weeks goes bye and she began to get knee pain in both legs then her ankles became very week and she fell 19 times in two weeks.

Anitdepressants were added not for pain releif but one doctor thought she was depressed from having had cancer and hadnt got over it.

Many atrip over the following year to hospital with intense pain and edema and hypersentivity to touch cold heat and brezze!!Sound familar?

She was placed in mental health care for councelling guess what they discharge her saying she was epressed because no body beleived her pain was real.

Finally midle last year a gp refered her to the pain clinic here in christchurch.We had two weeks there. They said she had a disease of the centrel nervous system and chronic pain condition.CRPS was the diagnosis.They never put it to paper.

Change antidepressant to one that tricked the body into relising for natural endorphines.(natures pain releif) Ok that went fine for a month then vicki devoloped angina and bad heart rates.

So another change of meds.It was ok but not monitered.Vicki dosent attend school as noise and bumping flares things up bad so i teach her at home.We moved to Christchurch October last year and found a GP who was prepared to listern and stand up for Vciki and has vicki on weekly visits just now for pain managemnt and heart problem supervision.

We recently brought a wheelchair about 3,500 worth for 550 $ so that was good there a weekly bouts of needing it,Cold weather has hit her hard but she has the most beautiful smile.Will forward a photo soon.

We had a emergency trip last night to doctor her heart hit the 140 beats per minute not good shes increased her betablockers.But the adominal pain which is realy a migrane needed her to have two injections last night.

She has settled today as another one of my blessings is unwell today.SJ has a major infection in her stoma site.Great!!!!!!!

Please do keep in touch i reead my emails daily but dont feel like answering always straight away..

Take care pain meds time in our house so the doctors in ..

Catch you tomoorow

lois and vicki and tribe.sabiha kasar wrote:

Lois omg your house hold sounds a mixture of fantastic and tragic.Cant believe you have had five children I thought one hurt enough, am truly sorry to hear that you also lost one. I will not go into that as Im sure the pain is to deep... I only have one but to me he is my sunshine and my reason for not getting to dark about my future. If you know what I mean??

Where do you live and am so sorry to hear that so many in your house are unwell. What is the connetion, its it in our genes.. Like it is in others for diabetics, or cancer or heart problems..

Love the gin and tonic pun. could do with one right now..

Is your daughters condition debilitating or is she able to still go to school and function. Where is her problem.does she have a boyfriend, am sorry she has lost a lot of friends tell her it happens at all ages that some people just arent able to be there for the hard stuff.

Im sorry to also hear your b in law and your husband and even yourself have not been spared. Life sucks sometimes.

Have you ever been to melbourne, its been raining all day... which is nice to hear the rain on the roof and also for the farmers.. kind of drought here at the moment in the country areas.

I wish I too had the kind of family you have and the animals. I live alone and am single.. and feel with the current situation will be for a while.. its so much easier to deal with things in life if one has a supportive partner.

My dreams were to travel this yr as my son moved out of home 2yrs ago to move in with his girlfriend. son michael. girlfriend erin.

have a sister who is a nurse and she is as supportive as she can be with working and having a 10yr old girl and a husband. I only see her every few weeks when Im up to driving.

thanks for you lovely letter.

sabiLois Coulter wrote:

Hi sabi,

welcome my austrailian friend.Me a kiwi.I have a daughter with rsd she is 14 this is her 4th year with this problem.Vicki lost alot of her friends over the past 4 years.The only true friends seem to be those that have long term illness of differing degrees.

My husbands brother also has rsd and my husband is suspected of having it in his neck.And now my phsio is question my back pain as it.So we are keeping it in the family.

Its a devistating disorder not just because of the pain but the emotional impact and the total disrupting to goals and plans.

So many in the support groups often only cope with hour to hour rather than day by day.

Please know anytime you need a box of tissues or just want to vent i offer support.I cannot say to you i know how you feel that would be unfair of me as i have noticed this syndrome effects people in different ways.But friendship i do offer.

I am 37 mother of 5 girls one deseased and ages ranging from 14 down to 7.Married 18 years in november and have my mother living with us.She is 83.So we are a household of 7.Plus two rabbits they are called Gin and tonic and 3 cats and four goldfish.Plus assorted visitors who leave there worries but hay they have to leave them somewhere lol!!

WELCOME TO THE GROUP.

lois and vciki from christchurch NewZealandsabcha1962 wrote:

Hi I am a new member of this group and just wanted to introduce myself.I have suffered for the last year with complex regional pain syndrome..which I now would like to call completly rational person syndrome... hense having been treated like a nut case for the past yr and a half.I live in melbourne, australia and hve lost a few friend due to this horrid situation.I am only 41 and feel that my life is now at a transitional phase... transitional as Im still not sure what and how I will be the person I used to be.I was a practice manager for a dr for 10 yrs...my crps is in my right arm.... and only one mth ago I lost my job.I am single and have a 23 yr old son who lives with his beautiful girlfriend of 4 and a half yrs..The isolation is as hard as the

pain.regardssabi

June 9, 2004

My god you are such an amazing person. Only a few days ago you were just coping and now you have had to deal with so much... I am so gratfull for you replying to my email... Is their anything I can do ... I am so overwhelmed by your love of your daughter.. am sure she deserves all the love you bestow....if vickes is interested I would love to chat to her.she sounds like an incredable person...why are we given this crap to deal with .... well I have no idea but if it werent for the crap I wouldnt have know someone like you.... I admire you and I am gifted to know you...

in my thoughts always, I am so blown away by your reality.