what do i tell him?

[wednesday mc haggis]

I had been diagnosed with endometriosis and chronic fatigue, until 6 weeks ago i was satisfied with that answer , but i have too many other symptoms, and SJS fitted really well, but i didnt know about it till 2 weeks ago, now docs agree and are testing and refferals are being sent.
This is for 6 months ive been like total road kill, and my 13 year old son isnt stupid.
At 2 his dad left us for someone else, we were left homeless as i couldnt afford the mortgage on my own, he rented the house out until it was to be sold, spent the money and left us with alot of debt, i worked for ? 20 a week more than just giving it up , but im proud and worked.
My son was always close to me, he ha s been my soul mate and inspiration, daniel my second son came along 4 years later, and i adore him too, but he is an immature boy and has a head filled with ruinscape.

Euan is 13 going on 50, head of science ,maths and his hobby is rocket science , with the most caring wise old soul.he gives up lunchtimes at school to collect the recycle waste and can crush, he is the smallest wee boy( wears clothes 2 years younger) who at 8 climbed the highest mountain in britain for the childrens hospice raising ?350 , he has the heart of a giant.
he has now asked me what the gynaecologist said ,and is asking more and more questions.
I only found out about SJS myself 2 weeks ago, and now it seems i have that and have CNS involvement, my memory gets worse daily ,  more and more clumbsy, and yesterday the tips of my fingers in my left hand went numb, so i know im quite a way along in SJS its been brewing for years and i ignored most of it as a single mum, until 6 months ago my partner moved in , with two lively boys im one to just get on with everything , now thrown out of denial and into reality i am coping, i always have and i always will, a coper is who i am.

Thing is he looks me in the eye and can read my thoughts and i can with him, its always been an inexplicable bond.
I dont know what to tell him, i cant lie  to my son i never have , i have taught honesty through example, but this for me is the worse part of the last 2 weeks.I dont know i can look in his eyes and deal with the pain in them, and i dont know that i can play it all down and look in them....i after a violent womanising father and a mother in complete denial , promised my son when he was born i would never left anyone hurt him, and now i feel i am breaking that promise , and it will be me doing the hurting .I ve stood up to a 6 ft 3 known violent neighbour who drunk knocked him over in the street, at 5 ft 3 i had that bampot by the throat like i was 7 ft , and told him if his drinking ever caused injury to my son again, there would be one  less alcoholic in the world, to this day i was that angry that man walks the other side of the road,but i dont know where to begin in protecting him now....


T xx

[Scottietottie]

Hi 

SjS is not MS. SjS is interminable but not terminal. There are medications which can improve symptoms. I think that by the time a child is 13, obviously very intelligent and asking questions - you should be honest with him. If he likes science maybe he'd even help you do a bit of research! Tell him it's all new to you. Tell him you're coming to terms with it yourself - you don't have all the answers but also that you're not going to die on him, which is possibly what he's worried sick about.
Kids are amazingly resilient and adapt to different circumstances better than we do. My oldest daughter really liked climbing mountains and things and I definitely wasn't up to it. She made a friend whose family was willing to take my daughter along. I had nothing to do with it but kids make their own way. They just do.
I got hooked on Runescape recently and have managed to unhook myself. It can be horribly addictive!!

Oh - Plaquenil helped my brainfog considerably and also keep a close watch on the thyroid. when it goes wrong the 'cognitive impairment' is ridiculous!! (So bad you might not even realise its happening!)

Take care - Scottie 

[Epson]

I think you know the answer Mc Haggis, think back to your Reiki, you know, about being honest with your dealings with people.

It seems that you lost your Reiki spirit today,  you have to get your mojo working girl.  Be glad it's Sjogren's and not terminal cancer or some other equally hideous illness.

The answer lies within, now snatch the pebble from my hand grasshopper.

[Chana M]

Hi Wednesday McH

It sounds to me as though you're on the rollercoaster ride that diagnosis brings.  There's the high of actually having a diagnosis - and a world of others to share it with - and the relief that it's not something worse.  Then there's the realisation that this is something you're going to have to adjust to and accept; that your life will never be the same again.  And because your life is different, so it is with your children.

From all your posts it's clear that your joy for life is infectious.  You are loving and loved, and you know that the privilege of having children brings with it great happiness and huge responsibility. My children are older than yours but I still feel hugely protective of them, even though I remind myself that they are thoughtful adults who can cope (and have done so) with so much that life sends them.  

Scottie's right about honesty.  Euan sounds like the sort of boy who would respond well to hearing that it's all new to you and that you're treating it like a journey.  You'd appreciate his help with mapping it out, finding out what options you've got, making the adjustments.  And sharing the new friends you're making on the way.  She's probably also right about what his big fear is.  Only you know whether he'd deal best with the direct approach, but if so it needs to be you who says 'are you worried that I'm not going to make it?'  Then you can reassure him that you were worried too but that you've asked people and, as Scottie says, SjS is interminable but not terminal.

CNS involvement is very frightening for you and for your boys, and you need to face it head on.  I have lots of neuro symptoms and they developed very quickly so I do understand your fears.  Is your rheumy starting treatment soon?  My neurologist delayed for far too long, and has actually apologised for doing so, but once you've started on Plaquenil and Prednisolone things should start to slow down a bit.  The treatments take time to work, and time to adjust to, but the sooner you get started the better.

You say that you're a 'coper' and that's very clear.  You sound like a wonderful mother, very sensitive to your boys' individual personalities and needs.  I do hope that SjS World can be a place where you don't have to be strong all the time; let us hold you while you go through this adjustment time.  As Pooh always says, we are family.

With warmest good wishes - Chana

[wednesday mc haggis]

WOW ! thnakyou for such lenghty replies


thankyou !! my head just seen my arse for a while .

I  thankyou so much for your words, theyve really put it in perspective, i guess im one of those spiritual ppl who accept fate, for myself i always think everything is a learing curve, for my kids i want cotton wool. I know yourr ight and i likely am upsetting him more by not saying straight out, way weve always been with each other .Aye i have alot of lov ein my life, a friend of mines throuhg another chat site i was on today sent me cakes she home baked and a card for us all , really blew me away, the young couple i matched maked with, took time during a move to sent me an inspirational poem and a long email, ive found you all, and my friends in leeds phon everyday just to talk crap with me ive always been agony aunt to my lot, and theyre all saying your the strongest old boot we know and just for a second this morning i lost sight of that.

I am still fighting for diagnosis, gynaecologist think thats what i have, i know that what i have, just got the bloods today and im sero negative, im going to pay to see a rheumy privately so i can see one quick, im not rich but i need it sorted so i can get the meds i need.guess not being sero positive threw me today as well, now im scared i wont be beleived,and obsessing that the rheumy will play it down like every other doc i seem to get , but  ill cross that bridge and burn it down .  but yup just knowing myself its SJS was a real high in a sense, got it was good knowing i wasnt insane lol.I think my mother being in denial dont help she still insists till a rheumy tells me thats what it is, she wont hear of it, im a hypochondriac have been for 5 years, she wont accept that ive been muddling through just not knowing whats wrong.

Aye euans a bright lad, a coper too, i forget all he has coped with and he willl be fine, i just need to sit him down and say exactly what you have said, im learning myself, i am NOt dying i am just learning to deal with symptoms is all .I know from nursing terminally ill for many years that i am lucky, why i am mostly buoyant  , i have years and hope and damage to do for a long time, damned if im giving into any of it without losing my fingernails in the fight first

epson aye you are too right ! and thankyou for being honest enough to tell me , feel foolish really all youve been through last week .

scottie   runescape is addicitve i deleted my account lololol . and thankyou for your words , they make alot of sense.

chana   your a wise old soul, your words are like a lesson from a trusted confidante , who makes my eyes fill   

right have given meself the boot up the arse i needed so badly and im off to have a cuppa and tell him

T x

[Epson]

Mc Haggis,

You sound better, but don't we all feel the same way from time to time?  Lets face it, it's a drag to be sick so much of the time.

I think it is only natural to be a bit melancholy once and a while, unless your on drugs and I am not sure what drug that might be, but give me some

[Katybarstool]

T

the others have said it all. I'm glad you are feeling more philosophical. I bet Euan will be so relieved when you tell him how it is.

Hugs
Kathyx

[wednesday mc haggis]

epson    indeed when i get my hands on those drugs, i ll happily share them out lololol

kathy

I sat my son down last night and told him that i am being tested for other things, that i shall likely need drugs for, i reassured him i was not dying , i m just having alot of symptoms that need to be treated, just like my IBS , wont kill me but i need to leep an eye on it, and that i ll be seeing a rheumy to speak that out with them . he seemed so relieved, and said it would all be ok, he then sat and played with my hair and brushed it for half an hour ( he always did this to calm me ) and i felt blessed , today i feel back to my yup philosophical self, what will be will be,  he said i knew something was wrong you never do the housework the way you used to, i said well bigger worries in the world, he said well it seeems to have cured you OCD about it, now that mad eme really laugh, i hhadnt thought about that, and indeed it has lol, so something goods mae of it all lolol

thnakyou so much ppl, i just needed a mirror help up so i could see it all more clearly

Love and light

T x

[Scottietottie]

Hi 

that's great that he's taken it so philisophically. He sounds like a lovely lad. I'm sure he'll happily support you through all of this and once you get on meds you may feel a whole lot better.
He'll feel all 'grown up' that you've shared with him.

Take care - Scottie 

[wednesday mc haggis]

scottie agreed   feel i ll take whatever comes now, i got him on my side

T x

[irish]

McHaggis, The important thing is to find a doc who believes in being aggressive in treatment in spite of a person being seronegative. Make a list of all of the physical issues that have been bothering you and keep a daily log of what is going on with you healthwise. Plaquenil and prednisone work very well for many people, but there are times when the DMARDS or drugs such as Cellcept, Imuran, Methotrexate are needed to halt the immune assault on the body.

There is a thread on the board by Dr, Julius B. who is a doc out east and runs a sjogrens clinic. He answers a lot of questions about sjogrens and neuro issues. Very good stuff to print for your doc to see. Look under neurological section under topics. Also, check the articles on the board listed in the menu on home page. Good info also.

Find all the info you can about the treatment of seronegative sjogrens to copy and show your doc. Also, be sure to get your thyroid checked as many people with autoimmune issues have thyroid issues that go undiagnosed for years. About a year ago I developed so much joint pain and problems doing steps plus fatigue and generally felt ill. I had just had my blood work done about 2 months earlier so it never occurred to me that it was thyroid out of balance again. I ended up having my TSH checked again and it was very elevated and I had to have my meds increased again. I had a prescription for a walker with a seat and a basket and I thought I was just going to go down hill really fast. Now I am every more vigilant about my thyroid. Good luck Irish

[wednesday mc haggis]

Thanks irish

the info here has been invaluable to me and i shall take your advice , felt armed when i went to the docs yesterday, i didnt feel vulnerable i felt quite knowledgeable in a way, i rhymed offf my symptoms, explains how it affects me to cause those symptoms, nad what i needed from here on in, of course again it wa s played down and just need to wait on rheumy, but i at least got it another letter sent off saying urgent which was  aminor victory i felt

It will be what it is and i ll fight it as it comes, there is a saying here came from a soft drink the scottish like so much , " made in scotland from girders" and i am just needed to remind myself of that lol

T x