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Discussion Starter · #1 ·
sorry not been around in a while. Life took over from the computer!

Well now have official diagnosis....again...of Lupus with overlap rhuematoid and fibromyalgia. maybe even mixed connective tissue.
I am starting on Methotrexate on Sunday Evening...David is away for the weekend so I thought it was probably sensible not to start on something with potentially yukky side effects when home alone wih the kids.

I have some underlying probs that mean I have to have weekly blood tests whilst taking it and living with children who colonise pseudomonas means I also have to be very careful about possible infection but then we are very careful with handwashing and disinfecting anyway because we don;t want to pass that around at the best of times!

the four weeks I have been taking the pred at 20 mg has given me a lot of relief and although still having significant pain I have not felt sick with pain constantly as I was, nor am I passing out...So I am now hoping that reducing the steroids and starting the metho will get similar control and maybe I can refind the parenting skills I seem to have lost.

Meanwhile the chidlren have all had appointments in the last 3 weeks that have unveiled big issues...Jonathan has lost the vision in his left eye from a retinal tear...too late do anything about it...he has severe myopia and the risks for his other eye are huge...jonathan has down Syndrome and is severely impaired cognitively so coping with loss in vision is not going to be easy for him. He lives for his Videos and colouring,
Rosie's epilepsy is really troublesome right now and she has develiopped a reaction to one of her drugs...now waiting for neurologist to get back to us with change plans.

Eve's scoliosis has progressed from 22 degrees to 30 degrees over the summer and she is now facing spinal surgery...not a good prospect as her breathing is impeded by the twist in her thorasic spine and her chest suffered badly from the last aneasthetic.

Joshua's vision has now dropped to a level that registers him officially as partially sighted.....he is a child of normal inteligence in mainstream school and the LEA are being difficult about assessing his needs. He is due to move to secondary school next year... Wish they didn;t have to grow up! So much easier to keep them safe when they are little!

Planning a girlie weekend with Christina and Eve as Rosie is in respite and David has taken Joshua to Thruxton for the TOCA Racing...We have Jonathan too but he is keen to go look round TOys R Us which is what Christina wants to do!!! It is lovely having a little girl who likes to go looking without needing to buy!!!!

Hugs
 

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Hi Tina,

At least one thing is settled now that you have a diagnosis. I hope the Methotrexate kicks in quickly for you. With so many with special needs your own health is extra important.

Take care,
Lazylegs
 

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Tina

I pat you on the back for all that you do and all the responsibilities you have. :flowery:


I do hope that the metho works for you with no side effects. That would be nice.

Enjoy your time at Toys R Us.
 

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Discussion Starter · #5 ·
Awww, gys thanks for your thoughts...We do what we do by choice and are not always that god at it...dont pu me on a pedastle I don't like hieghts!

we had a great time at Toys R US and managd to buy a really neat computerto start eve's sitch access communication. We had a Sudy Lunch out after Church too and he boys had enjoyed their weekend.
No ill effects from the Methorexae...took the first dose on Sunday night...so that was a good start!

Bit of another shock on Monday when we saw Eve's surgoen...her defective swallow is proving to be more of a problem as she develops more salvia...we knew she was aspirating and had on occasions really struggled with choking when tilted bac or if she ever laid on her back...however when postioned with her bac held straight and reclined in her chair she now stops breathing within 15 seconds!!! not a good plan really! So now we are being referred to a maxilo-facial surgeon to consider botox injections to her salivary glands...if succesful this would mean a recomendation for surgery to remove them! How can your own saliva be life threatening???

In the meantime it seems we can only ever leave her unmonitered when she is laid on her left side!! Thankfully that is hr preferred position for sleep!

I will endeavour to find som time to read posts and respond where appropriae..in the meantime be assured of my love and prayers always!
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Hi Tina,

I'm so glad that you are now being taken seriously and treated. I sincerely hope that all will go well with the meds and help you cope.

I hope that all goes for the best with the kids and do try to get enough rest and look after yourself even if you are feeling a little better :)

all the best,
Katharine
 

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hi tina....
:grhug: big hugs to you & your family..you certainly have a lot on your plate & still manage to remain positive!!you deserve that pedestal :) not a high one though,just the right height for you to cope with :lol:

i'm glad your first dose of methotraxate went ok,good luck with it, i hope you have no problems & start to feel better soon :luck:

i'm so sorry your children are having further problems,i hope they improve soon,good luck with eve's appointment...
please keep us informed ...well when you get a chance that is :wink2:

take care & try get plenty of rest
best wishes to you all...karen x
 

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Hi Tina I have a family of 7 but apart from the bloke they all have four legs 2 cats & 4 alpacas. I take my hat off to you for somehow getting through the demands of your life- it makes me tired just contemplating it.
 

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Hi Lucy,

This is a very old thread 10/13/07. You probably wont get a response from the person who started this thread because she hasn't visited since 7/7/08

Lyn
 
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