coping with APS and other illness - Hughes Syndrome A...

Hughes Syndrome APS Forum

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coping with APS and other illness

christinebonner profile image
10 Replies

Today is a bad day for my have bad pain in my back with is my kidney playing up due to having 2 tubes coming out of my left kidney was born like it but only found out a few years ago when i had a lot of trouble with kidney pain,

I have had 15 miscarries and have one lovely son who is now 31 which i was told i should never have had,

i did go to Pemby Hospital and test done on mine and my Husband Blood by a Doctor Taylor and there found out that my anitbobies was destroying husband sprem at the Time no one every did a blood test to check clotting and that was only found out a few years ago when i had high blood clotting, i was thinking all the worse things that could be wrong with me

i am a diabetic and have been since 2000 and i am type 2 and take tablets twice a day for it

i have high blood pressure and take Aprovel and amlodipine plus asprin

simvastatin and hrt

i get very bad cramps in my legs so i have to take Quinine sulphate which works very well

Citalopram for depression which i have now cut down to half the dose i was before Christmas and hope to be of them before The end of this year

Telfast for my hayfever and itching skin that works must day

i also am a winter asthmatic

A few months ago i found out that my spine is wearing out on C2-C6

and i have arthritics left knee

now i am having to copy with rashes on my body and red blood spots, so i have E45 to help with that

plus when i am in a lot of pain i take Naproxan and Co-codamol which i only take when i am in a lot of pain

I dont sleep very well but that may be because of the tablets i take

last year a person i meet on face book told me i was all ways ill but as you can see the above meds i would not be on if i was not ill.

I have a very Good doctor and nurses where i go and that helps, i will not let the illness get me down

I make cards and sell and some of the money goes to the Kent Air Ambulance , plus i do knitting and read, did not do any yesterday as my hands ached so much

I now care for a old man that lives in the same building as me and that helps as i can have a rest in the day, as when i was working full time i would just come home eat and try to sleep

sorry to rant on and i know a lot of you have worse illness than this

Thank you for this site as it helps me know that some of the things i am going thought is to do with APS

Love to you all Christine XXX

( sorry if there is any spelling mistakes)

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christinebonner
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10 Replies
MaryF profile image
MaryFAdministrator

HI there, it sounds like you have quite a lot of positive stuff going on to distract you a little from things that are not so good at the moment. I am really pleased to hear that you have good medical contact with the doctors and nurses, that is great news I hope being on here makes things a little easier for you MaryF xx

christinebonner profile image
christinebonner in reply to MaryF

i am now of to bed to loose myself in a good murder book which after 18 months of not reading much i have started to read my 8 th book this month, plus i got a wii at christmas to help get fit and i will start swimming 3 times a week, i will not let things get me down, i am a fighter and i think of people that are worse of than me

jessielou profile image
jessielou

Hi Christine

Im so glad you feel this site helps. Sorry you having a bad day. Thats what we here for and a rant when you need it.

Thank you for sharing your story and so sorry for all the losses pain and heartache you've been through. Yours is a story that so many of us relate to and understand.

Another fighter in our midst.

Hope for better days for you and all.

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

christinebonner profile image
christinebonner in reply to jessielou

I am a fighter on my own now but my ex remarried and as 2 boys from that marriage with i am please with. Be fore we broke up i was a fostercarer and looked after 22 children in 6 years so there are like my family and i still talk to a few of them,

i am of to Doctors hope fully tomorrow as i am sure i have another kidney infection

last year i started writing short stories to help me but i have stop for a while

thank you once again for the site i am sure a lot of my illness are to do APS, but some doctors at the hosptial dont care or read your notes i have been told loads of time loose weight and you will feel better

paddyandlin profile image
paddyandlin

Hi Christine

I am glad you feel this site is helping, As everyone above has said thank you for sharing and we all here to help in any way we can.

Paddy

Storky profile image
Storky

Hi Christine

I just read your blog and noted that you were trying to come off your Citalopram. I don't know if you know this but you can get this medication in liquid form, in drops. They come with a dropper so that you can just measure the number of drops into a glass of water or juice.

The beauty of this is that it is really easy to just use one drop less/more as you go along. I was prescribed these when I was going through a period of really high anxiety during my employment tribunal etc. My GP told me to start with three drops a day and then when I was used to that if it was not enough just add a drop leave it at that dose for a few days to see what the effect was and if not enough or too much add another or go back to previous as the case may be. I was to do that until I found the correct dose.

Coming off was easy as I just reduced the dose by a drop a week so I hardly noticed it.

I think it is a good drug for anyone who has a period of anxiety as you can really control it and can take as much or as little as is needed. I only took the absolute minimum that I needed to control my symptoms too. I have recommended it to a few people who also found it worked for them. I think its also about having the control.

Of course some people just like to swallow a pill and be done with it and thats fine too so it might not be right for them.

Your GP would be able to tell you how many drops to take to equal the dose you are on at the moment.

Hope this helps.

Hi Christine

Wow - you are a bit of an angel really aren't you!? All that going on and you make cards for charity and look after your neighbour!! What a star.

We all know what you'ree going through (although to different degrees and with different symptoms some times) and we all know that some days it is tougher than others! Just keep enjoying the good days and forgive your body for the bad ones (the best advice I ever got I think!).

We are always here and if you can we'll help.

Hoping tomorrow is a good day.

Take care

Tx xxx

christinebonner profile image
christinebonner in reply to

today i feel a lot better back is still aching a bit but i am, drinking loads of fluids to help flash the kidneys to see if it is a infection as the doctor all was says try that first,

the pain killer are helping but i hate taking them as i take enough tablets as it is

I am even doing a job i hate cleaning the fridge / freezer out

The card i am trying to sell and there are only £1-50 but 50p goes to charity

last year i gave over 200 cards to charity Macmillan nurses for the person i care for and the ones looking after my brother-in law and i gave loads to the Kent Air Ambulance along with a load of knitting.

I dont like keeping still and have to do some thing

plus i will not let any of my illness stop me for having a life as i go out with my camera once a week and do site seeing

MaryF profile image
MaryFAdministrator in reply to christinebonner

Good on you Mary F x

christinebonner profile image
christinebonner in reply to MaryF

thanks Mary

i can now get thinks back in my freezer and see what i have got

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