Been losing the will to fight at the moment....

[popshaw21]

....and now slowly losing the sight in my right eye.And also back on the antibiotics for yet another chest infection.my INR has also be erratic rangeing from 2:1 to 5:1 and back to 2:1... I Hope everybodys fight against this cruel disease is working in some way.I'm having to have a friend to type for me....

[MaryF Administrator]

i a so sorry you are having such a tough time, and I hope you feel a bit better soon, I also hope your medical team check out your vitamin D levels as that is so often depleted with autoimmune and makes in immense difference to general health if topped up, myself and children on this despite doing stuff outdoors and also good diet! I think Hughes and Lupus must gobble up vitamin D! Mary F x

[loulou123 in reply to MaryF]

hi i messaged you the tother day well im so depressed i got told wenesday two days ago i have yet another new clot despite my being on treatment dunno what to do any more they kept me in hospital till i had a scan they then told me the scan results which is another new clot i always have my tratment nad i still keep getting the clots can any one help me please feel like im gonna go mad

[stillwaiting]

I'm sorry you are so poorly. I too have had to have someone else write for me in the past . Newly diagnosed, I am only just realising how cruel this condition is as I am told that all my health problems were down to Hughes. I think Mary makes a very good point - I had not thought about Vitamin D - my thinking power is so poor these days.

I hope you are feeling better soon. Get gobbling the vitamin D - I know I shall be!

Lynn x

[Jade]

Sorry to hear you are still struggling so much. Do you have a good consultant you can turn to? It's often too easy for GP's to keep on giving out scripts without getting to the bottom of the infection. Have you been tested to see if they can detect the exact bacteria you have?

Is there nothing that can be done to maybe save your sight.

I wish you much better health very soon. X

[popshaw21 in reply to Jade]

Hi jade thankyou for comment,my current rheumatologist is struggling and has sent me to see a professor in bristol who could'nt really help that much.my GP is very sympathetic and has been very supportive.

what i do find difficult is these terrifying seizures which i can have up to 18 in one day leaving me feeling totally exhausted,again the neurologist is scratching his head and im not getting anywhere with that.

The optimologist has confirmed that my sight will not improve and could get worse!

well hopefully when i get rid of this latest infection my mood will improve.

I hope everything is well with you and Take care.

best wishes

popshaw21

x

[Jillymo]

Hi popshaw,

I really feel for you, this is a bitch of a thing to have to put up with, it's not what I call living. Thought you had not been on for a while ! Try & hang in there hun it's just a bad patch it will pass.

You must be poorly to have to get someone else to type for you, have your eyes got worse ?

I know what its like been there so many times & back but it knocks the wind out of your sails.

Take it steady & give yourself some TLC....I just want to give you a hug __((*.*))__

Thinking of you

Jillymo xxxx

[popshaw21 in reply to Jillymo]

Thankyou for your kind words jillmo,and sadly my right eye has got worse which has been difficult to deal with,the consultant optimologist confimed that there has been some deterioration in the right eye and has increased the steriods.

Normally i can shrug my shoulders and hope that one morning I'll wake up and be able to see again.But im hoping when this chest infection has gone i will feel a bit more mentally stronger and can shrug my shoulders again.

Best wishes and Take care,and a big hug jillymo.

popshaw21 x

[Jillymo in reply to popshaw21]

Fighting infection is never easy with our type of illness. There has been some nasty viruses that have lingered this year.

Hope it clears up soon. Jillymo x

[Jillymo in reply to popshaw21]

Hi Pops,

You said "you were seeing someone in Bristol" have you ever seen a Doctor

Diane or been to the eye hospital in bristol ?

I have asked my Gp for a referal to Bath to see a Proff Mchugh David on here said "he was very good" it is about time I got some answers.

Hope your feeling a bit better today. Jillymo x

[popshaw21 in reply to Jillymo]

Hi jillymo,I have been seen by a professor in bristol who is an exspert on eye conditions,he was very sympathetic but unable to offer any help.I regularly go to my local hospital and have my eyes checked and it was the consultant optimologist who referred me to bristol.

I used to go to bath hospital and it was the doctors there who discovered i had APS and they where on the ball.

unfortunately i found the journey too long and as i can't drive myself due to the epilespy i discided to go to my local rheumatology department as it was easier for me.

Even though the rheumatologist i see has been very surportive he has'nt got the exspertise on APS and i have been thinking about getting referred back to bath.

I hope,well I'm sure you will get the answers and the correct treatment you need.

Good luck with that.

I'm starting to feel a bit better today,but still lacking in energy.

Take care and let me know how you get on.

popshaw21 x

[fchristal]

I'm also sorry to hear that you're having such a tough time. I lost most of my vision due to macular degeneration in my late 40's and it's a very hard adjustment. For years prior to that I kept having bouts of iritis and uveitis - always called "idiopathic" meaning they just don't know why. All went downhill from there with auto immune diseases just piling on - lupus, aps, ulcerative colitis, bechets. And, we are so suseptible to infection. I have found like otheres that Vitamin D has been helpful in very hight doses. I take 50,000 a week. I really think we have to look more seriously at integrated medicines. I'm not sure but I also thin Unigquinal is helpful. Frankly, at this point I don't care if it's a placebo effect or not. I just feel that trying something added to the prednisone, coumadin, plaquenil, etc. May help. I really hope your infection clears up and you get a bit better so coping is easier. Best wishes for you.

[popshaw21 in reply to fchristal]

Hi thankyou for your comment and i have been taking vitamin D which im not sure if it has been helping,its difficult as for the majority of the time i feel fatiqued and wearing that lead suit and everything is such an effort.

I'm sensible with my diet,and eat little but often.sorry to hear you too are having sight problems,I hope things improve for you.

Take care

popshaw21

[Hidden]

Goodness, I am sorry to hear that you are having such a hard time - it really isn't fair...

I am fighting with my eyes too - I have central serous retinopathy in my left eye. It's pretty scary.

I wish I could say something positive... I have been through some seriously low patches (my history is really long and fairly complicated) but you must stay positive, be kind and forgiving to your body, be thankful for all the bits that are still working - I know that sounds a bit hippy but i really believe that it works...) and try to do something everyday that makes you smile... sit in the sunshine, blow bubbles in your lemonade, have an icecream, toast a marshmallow, go for a walk, call a friend....

I hope things improve for you really soon.

Take care

Tx

[popshaw21 in reply to Hidden]

Hi Tasch,thankyou for your postive comment,hopefully when i can get rid of this latest infection my mood will improve.

I hope things improve for you which with your postive outlook will get you through.

Take care.

popshaw21

x

[Hidden]

Hi popshaw,

I am going to have you in my thoughts. It has been a bit too much for you now. INR going up and down. Only that is enough. It is the infection also. And your Eye.

I hope you have doctors who really understand the APS illness.

A hugh from Kerstin

[Hidden]

Hi popshaw again,

Do not loose your will to fight!! That was what I wanted to say. It will be better.

Another hug (this time I spell it right ) from Kerstin to make you feel a little better.

[popshaw21]

Hi lure,thankyou for your comment,when i can shake off this lastest infection then hopefully my mood will improve.

I hope all is going well for you.

Take care.

popshaw21

[Kathy829]

We fight this fight every day. One day at a time we will make it through. It can be overwhelming in the middle of a flare. My doctor increased my D as well as my plaquenil. My treatment clinic recommends an IV bag of water during my worst times. It does seem to help. We lean on each other for support during the dark days and we push through it. Hope your better already!