Thank you for comments.
Well B had her punch bioposy, internal stitches plus more steristrips on outside. Then a pressure bandage with a dressing on top.
They used a type of tape to keep the pressure bandage in place which is not suitable for anyone with thin skin issues. I had to remove the tape which caused bruising and cuts. I thought in the old days the community nurse would have come and changed dressing but these days one relies on mothers. It made me wonder what people do who live alone.
She bled and bled as us EDSer's are prone to do. The pressure bandage hurt.
She was brave.
Try telling a 19 year old, she is not allowed a bath for two weeks.
A photographer took photo's of the 'rash' but she only let him take them of the large area on her back. I totally understood. Nothing in his demeanor made her feel comfortable.
I think there is more but my brain is not working.
We waited patiently for results. She has had to keep returning at set intervals for extra blood tests and repeats of previous.
She thank god, does not have cancer, leukemia and they think not lupus, although the latter can be problematical to diagnose as it hides. Dermatologists can diagnose many things via the skin. But it seems not my daughter.
She remains a medical mystery. They are to have a team meeting to discuss her. The bioposy showed massive inflammation and necrosis. Which we are told is rare. The necrosis was a surprise to them as it is deep. They say.
They thought she had 'something' with the most incredibly long name. All things dermatological have incredibly long Latin names. But it was not that they don't think. Apparently tests can sometimes be negative when positive.
So we wait.
She is very tired. Very.
Her EDS pain is severe.
Relatives are pleased now it seems with the outcome.
For them I think that chapter is closed.
For us I feel its just beginning.
The dermatologist is kind. I felt she would rather have had a diagnosis because this wasn't your normal type of rash. It had them worried.
We see them again in a month.
B is vulnerable at the moment. We are endeavouring to surround her with love and support.
The crisis time has passed for the moment.
So once again we seem to have a 'rare' thing.
Except this rare thing has no name.
Me - perhaps I will write about in another post....
9 comments:
I wish that I could help you with my words like you helped me with stories of your Grandmother. I worry deeply over Veronica but I also try not to let it up to the surface too often as it would choke me.
Yay for not being cancer.
I don't like feeling helpless and EDS makes me feel very useless. Hugs to you my friend xox
I'm glad for you both that its not cancer but I do wish you had some sort of answer. The uncertainty thing sucks and is, in many ways, the most debilitating. Yes you know what it's not and that is good, but where do you go from there. It sometimes seems that for others once the big nasty is out of the way they think it is all okay and just move on. Unfortunately for you and your daughter it's not all nicely over. Life isn't a nicely encapsulated 45min'House'episode. Do you just keep waiting, trying to live as normal an existence as you can? I hate limbo. I still live with the horse with no name, no direction, no prognosis, no real treatment plan. Just the sit at home and try these drugs and we'll get back to you.
I so feel for you both and wish I had some inspiring words to give you. All I can say is I'm thinking of you. xxx
Oh Achelois, knowing that it is not cancer or leukemia, that's a good thing. However, not knowing what it *is*, that's just bloody frustrating and in this case, with the rare stuff going on (on top of the EDS) not knowing is not the best option.
I've been thinking of you a lot lately and I will be here, waiting for her results.
Hugs to you and strength to all of you.
xxx
so pleased it wasnt a nasty.
yet being left in limbo, not knowing. sending good thoughts your way. i hope b pain will ease soon. take care of yourself too, she needs you. xxxxx
I'm sorry for the "unknowing". Not knowing is so hard. Thank God it's not cancer, but I know that is not a total comfort to you, now you don't have an answer. I am praying for her. I know you are not particularly religious, but just know she and you are both in my prayers. I took an appreciation for Rust's comment about a 45 min episode of House!! I wish life could be like that for all of us. I love how in Mystery Diagnosis they wrap up 20 years of a persons fight with an unknown disease into a 30 minute show... I wish I could do more than send virtual thoughts. Rest and peace.
Thank you all. It was a hard post to write and have decided not to post on 'that' anymore as it made me realise how upset and frustrating the whole thing is. So unless we find out I will just post about other stuff otherwise my blog will remain empty!
Your words really helped me people. Thank you.
Achelois
I'm so sorry to hear what's going on.
And I hear you when you say...
"Relatives are pleased now it seems with the outcome"
I know that scenario only too well!
I am so sorry. I am thinking of you, oh yes...
About necrosis- I had it once (before MS, no relation I guess) and no cause was found for it. It was found in the crook of my arm inside my elbow. I was not sick or anything but I did have numbness, tingling, etc in my hand. Odd. They thought it was a "cyst" and were surprised when they opened it up.
Blessings.
Hi Achelois,
Thanks very much for your comment on my blog. It meant a lot and has made my day all the better for reading. That is something rare and much appreciated.
Sorry it has taken so long to get over here. I'll catch up with the earlier posts over the coming week.
I'm glad to read that you have some kind of relief at the moment even if there are no answers which must be furstrating. At the very least some of the worst fears have been ruled out which I can only imagine as a parent is a great weight lifted. It can't though be an easy time for your daughter so I hope she has happier times ahead.
All the best
Nechtan
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