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Update on daughter.

kellermankellerman Posts: 741
edited 3. Dec 2011, 14:54 in Living with Arthritis archive
Hello everybody,
Fantastic doctor...explained in full,answered questions really good.
My daughter has ANKYLOSING SPONDYLITIS.
I'm not really surprised...I knew something was going on just didn't know what.
More blood tests on the way.He gave her loads of info.
Shes a bit freaked out....but I've told her that although the info is good it doesn't mean she will or has got all symptons.
He wants her to have another xray...but not for 2-3 months because of the radiation.
Also physio....but our waiting list is long,so he is going to send her somewhere else and refer her to rheumy.
I'm pleased I went with her.
So...you lovely folk will have another poster shortly....she might lurk for a while but will definately join.
Now I'm still waiting....and still can't put my foot on the ground or for that matter can't get my shoe on....had OH's slipper on to go out.
It's getting really cold...here up north...so take care everyone.
You are my cyber ears....I need you. May

Comments

  • millie78millie78 Posts: 71
    edited 30. Nov -1, 00:00
    Hi there glad your daughter has answers. How old is she?
  • bertyboybertyboy Posts: 2,052
    edited 30. Nov -1, 00:00
    hi May [my name sake] it sounds as if your daughter has a good DR, clear explanations can make thing so much better , hope your feet are keeping warm in oh slippers x
    I know i am a lady ,all life is a journey xx MAY xx
  • kellermankellerman Posts: 741
    edited 30. Nov -1, 00:00
    Hi,
    Millie...this is my middle daughter....she's 36....has a heavy job,plays in a ladies football team...done a sports coaching course and teaches 7-8 year olds soccer on a week-end.
    It's hit her really bad....always so lively.
    DON'T KNOW WHY THIS POST HAS APPEARED TWICE.THINK I'M GOING MAD.
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    hi May,

    i am sorry she has the AS but its good she will be seeing a rumo and hope that comes through fast. she may still be able to be quite active you know so hang in there.

    the as site have some very good exercises on it for the time being and there are some on this site as well she could start to do now as the more you keep it moving the better it is.

    hope she will join the site as there a few with as and its a good thing to know there is life after diagnosis and they can tell her there is. hang in there and i so hope you both get a bit of an ease up soon. cris x
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Morning May
    Glad you went with your daughter....at least you know now what you are dealing with. She probably still wouldnt have asked much :lol: Kids!!! Mine are 31 and 32 and still kids to me.
    How did you go out with slipper on yesterday.....up here!!!!! :shock: :shock: It was freezing. I was cold because we changed our minds where to go and I only had a thin jacket on.....wasnt outside very much.....from car to store but that wa enough to freeze me. Not sure about this morning....we left the heating on low last night and I'm not up and moving about yet...like I said in the pm...just going to get dressed now.Good luck for tomorrow.
    Love
    Hileena
  • julie47julie47 Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi may

    Well I am pleased that you managed to go with your daughter to her appointment. It must be a relief to you both that you now have a diagnosis, but also a shock. I am sorry that it is AS but it sounds like the doctor was very informative and looks as though he is tryin to help as much as possible, which is good news.
    I hope your daughter gets all the appointments needed through quite quickly then she can start getting the As under control.

    Take care both of you, and may you keep resting your leg

    Love Juliepf x
  • barbara12barbara12 Posts: 20,899 ✭✭
    edited 30. Nov -1, 00:00
    Hi May
    Im sorry your daughter has got this to deal with, but glad that her docter is on the ball and she has a diagnoses
    Hope you managed to get out with that slipper on, I am wearing sandles because my foot is sore, .please dont let it snow yet. x:-o
    You take care and I look forward to seeing your daughter on here.
    Love
    Barbara
  • ironicironic Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi May,
    Well in a way it is best that your daughter knows for sure what is going on. I do hope she joins the forum when she has gotten over the initial shock of having AS.
    I hope her appointment comes through quickly for the Rheumy she will be so worried about the future so give her a hug from us.

    Yep it is blooming freezing here too got me woollies and big coat out pity about the footwear though! :roll:

    Lv, I x
  • kellermankellerman Posts: 741
    edited 30. Nov -1, 00:00
    Hi Everyone,
    My daughter seems to be in denial.Says it's just aches and pains and they will go away with painkillers.I too hope her rheumy appointment comes through soon.
    I had a rough day yesterday....took sister to hospital for 2nd cancer op.
    John had to drive and come back for me....foot still swollen....still wearing his slipper.
    I'm going to try and get my daughter to post on here....maybe some-one can help as apparently mum and really good GP are making it seem worse than what it is.
    I've tried telling her I don't want it to be AS any more than she does.
    She is getting loads of excersise with her job and football...but I'm not sure if these would be the best ones...although she wouldn't give either up.
    I've got a lot going on at the moment and haven't got the energy for argumements.
    I might get her to read this post....if nothing else.
    Oh now I'm getting weepy....lack of sleep...take care everyone. May
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi May
    I know its no comfort to you but a lot of us were in denial when we were first diagnosed. Shes not likely to come on and post here if is is in denial.
    I dont know much about AS {I think you said} but arthritis is arthris and pain is pain. Mums are probably the last people daughters will listen to if its something they dont want to hear. What would be the best thing I think is if someone around her age with arthritis talked to her......what about the young peoples forum......anything on there that might help her/that she might listetn to?
    You are bound to be shattered with all this.
    Do as little as poss.
    I think i've got a pm from you....I'll go and chrck
    Love
    Hileena
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Dear May

    I totally understand that you are worried sick about your daughter as well as your own health and that of your sister. You have such a lot going on and whatever I say, you will continue to worry and fret because that is what we do when we love our children and family.

    I have a feeling that your daughter will not be too keen to post on this forum as she knows you are here and may be aware you have spoken to us about her too. She only needs to read your postings. It would be better initially anyway if she had her own space to be able to say exactly what she wants.

    I have looked on the net, as I do, because when I am concerned about someone I try to point them in the right direction if they are willing to try because not suffering from that type of arthritis I unfortunately cannot give first hand help and guidance.

    I wondered if the site below may help your daughter. There is a lot to read if she wishes to, about others and how they have coped. There is a forum, but I think one may have to become a member and pay subs to be eligible to join that.

    http://www.nass.co.uk/exercise/exercise-for-your-as/contact-sports-and-high-impact-exercise/

    I did read that contact sports and high impact exercises are not recommended for people with AS which I know will upset your daughter greatly. The reasons are set out clearly as to why this type of exercise is not too good for AS sufferers.

    There may be a local branch that she may like to join at a later date or even start one up in the future and if at all interested the information is on the above site.

    There are also other forums on AS and one was an amercian site but I would not have thought that mattered so much if just browsing to glean more information and there is no reason why your daughter could not join in there should she wish.

    The AC forum is a great site as we all know but, putting my daughter in your daughter's shoes if suffering from a form of arthritis and knowing that I am on here, she would wish to be on a separate forum from myself.

    I think you will have to be patient, dear May, as mums have to be from time to time, although I appreciate it is breaking your heart, but your daughter will come round to confiding in you about this but at the moment she needs come to terms with it, her way.

    Hugs to you all

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • frogmortonfrogmorton Posts: 26,168 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi May

    lposted 9or though l had :oops: ) on your thread the other day....but tis not here!!

    I had wanted to say l am sorry, but glad of a quick and efficient diagnosis and hope she does seee the rheumy ASAP....that will help - the right medication.

    I should let her deny it for a while....she will accept things in time....as you said likely when she gets to see the rheumatologist :???:

    Love and hugs

    Is sis ok??

    Toni xxx
    Love

    Toni xxx
  • kellermankellerman Posts: 741
    edited 30. Nov -1, 00:00
    Hi,
    Elna...Thanks for the thread.....interesting....lots I didn't know.I hope she will go on there.She still might come here though.
    I have the list of all the blood tests she had.Some I knew what they were others I've looked up.At least they were thorough.
    I am going to see my sister about 1.Not visiting time but I worked on this ward so its a perk.

    Toni....I know you posted on the other thread...though why there was 2 I don't know.
    Went yesterday morning with sister 8.30 and she didn't go down for op until about 4. We were both a bit fed up. OH had to drive....come home and come back for me.Felt like I'd done an early shift.
    She doesn't take kindly to a general anesthetic....so will be sick for a couple of days at least. I rang again this morning and she has no feeling in her right arm....may not come back.Another perk...when you speak to some-one you know on the phone.
    I never thought I'd say this....but roll on 2012.
    Must get sorted now. Take care its really cold. May
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I looked for my reply then realised I posted on the other one. :oops: It came on twice so I replied to the one that some others had but then this one took over. I hope your girl is feeling a little better about things, I hope your sis is doing as well as she can, I hope him indoors is still beavering away with enthusiasm on the domestic front but above all - I hope you are coping with it all. Don't forget to take time for yourself, please, you need to rest to keep your batteries as charged as possible, yes? (()) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lindalegslindalegs Posts: 5,394
    edited 30. Nov -1, 00:00
    Hi May,

    I'm so sorry your daughter has AS I bet it was the last thing she wanted to hear. She's bound to be in denial because no one ever expects it to happen to them. It's bad enough when we have these things ourselves but when it's our children it's worse, no matter what their age. Reassure her that AS can be mild, moderate and occasionally severe and there's no reason to believe it'll be the latter.

    Exercise is good for it but it has to be the correct sort. A Rheumy will help with meds and hopefully she'll be able to carry on doing all the active sports for a very long time yet.

    I hope your sister has a speedy recovery and the sickly days are soon over.

    PS I've heard that wearing a man's slipper on one foot is a new trend sweeping the nation, I wonder who started it !!!!. :wink: (Hope the swelling goes down soon)

    Love,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • kellermankellerman Posts: 741
    edited 30. Nov -1, 00:00
    Hi,
    DD I know you posted on the other thread...don't know why it appeared twice...my fault. Just shattered and got pain in places I didn't know I had.

    Linda...Sister won't or can't eat. She looks lousy...but they are giving her antibiotics before she has chance to get any more infections.
    I managed to get some sandals on today as I drove to the hospital myself.
    Nightmare....traffic jam...it's 18 miles so 36 round trip. In all honesty if I had to wear OH slipper again I'm past caring....new trend uh you think.
    I haven't seen my daughter today...she will call in tomorrow,usually does on a Sunday.
    John is still being great...he hasn't got fed up yet...but he went out today as he plays in a brass band and Santa was coming into town.
    He left a liver and bacon casserole in the oven for me. Thoughtful eh...but I'm not a liver lover although I've eaten a bit.
    It's really great being able to come here and vent my feelings.
    You all listen and support me. I am so grateful. May
  • valvalvalval Posts: 15,897
    edited 30. Nov -1, 00:00
    hi may i not keen on liver but love the gravy with bread. it was a lovely thought though you must admit.
    you are doing great girl we are here when needed just come on and vent if you need to val
    val
  • kellermankellerman Posts: 741
    edited 30. Nov -1, 00:00
    Thanks Val.....Yes nice thought....he didn't want me to come in and open a tin of soup....even that would of been a marathon task. May
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