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Hughes Syndrome APS Forum

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judes profile image
13 Replies

Thank you all for your messages of support I do read them all.

I’m not quite home from hosp, currently in a supporting housing flat. It’s designed to give intensive support for up to six weeks following a stay in hosp, there’s carers here twenty hours a day if you need any help.

I am struggling a bit, get very breathless and my legs don’t want to work,I’ve done something to my right hand which is very difficult to move or do much with.

So much as I want to be home in the best place where I can get the help I need.

Docs in the hosp, well, more like one of the consultants is as my son would say a right !!!!!!!!!

He stopped one of my arthritis drugs and I had a nasty withdrawal symptoms, ended up with small dose of diazepam as was shaking badly and was having muscle spasm it was awful.

I’ve now said to him if you want to change anything I suggest that you contact ST Thomas before you do.

I’ve managed to sort my INR out or as much a possible goes up and down like a yo yo!

Will be here for another few days then I’m outta here I need to get home now no matter how I am

Love and hugs

J

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13 Replies
KellyInTexas profile image
KellyInTexasAdministrator

I’m so sorry this has been so hard, Judes. It really really has.

What a lot you’ve been through emotionally and physically. You must be so exhausted.

I wonder what’s happened to your right hand? Do you think you’ve had a small stroke?

Don’t worry with answering these questions- especially if you are right handed- must be very difficult to type right now- on top of being tired! Recovery alone is exhausting- mush less adjusting to new environments and new sleeping spaces, noises- people always in and out- plus feeling rotten will disturb your sleep.

It goes without saying- I’m worried about you having a fall if your legs are weak and trembling right now. Take extra precautions until you are strong. ( what is it about a low inr that causes these trembling episodes? )

Please know thoughts are with you. We are a band of friends and unlikely sailors- we often navigate uncharted waters and stormy seas together- sharing laughs and histories and tales of our families and friends... while we help each other bail out buckets of watering when something breaks and we take on water...

You will be home soon- you are already in smooth waters and almost back in port!

rach1081985 profile image
rach1081985 in reply toKellyInTexas

Wise words you are such a kind and intelligent lady Kelly and all the best for recovery Jude's xdx

KellyInTexas profile image
KellyInTexasAdministrator in reply torach1081985

Not sure about wise- but certainly from the heart and from desperate experience.

Others here have and will continue to help shine a way forward and lend a hand... they certainly have for me... at the midnight hour. Quite literally. In a new city and in a new foreign country. I’ll be forever grateful.

MaryF profile image
MaryFAdministrator

All the best for your recovery, I really hope you can take your time and feel much better as quickly as possible, what are they going to do about your hand? Scans, or tests etc. Please don't do too much too soon, I completely agree with the wise words from KellyInTexas

HollyHeski profile image
HollyHeskiAdministrator

You have been thru such a bad time, please make use of those carers and rest up, you'll know when your ready to go home but dont push or rush it -give your body time to heal please.

Are they looking into your hand?

Your doing really well, keep going, xx

judes profile image
judes

Hi Kelly

It’s interesting that you compare my journey to a sailing journey. I think and was sailing before I could walk, spent many happy hours sailing or on canal boats with my Dad.

I’m struggling a bit with rehab my lungs don’t want to cooperate, and I won’t be getting home til I can at least make myself a cup of tea and something to eat. Tho as I always say there’s enough take out places in the city to have a different one each day🙂

With my hand the docs think it is due to hypoxia at sometime when I was having loads of oxygen. Add to that a very low INR my blood must have been like mud!

I’m determined to get everything on the right track so I can get home

Love and hugs

J

XXX

KellyInTexas profile image
KellyInTexasAdministrator in reply tojudes

Slow and steady wins... the way forward. It’s not a race- it’s the way forward.

I have absolute faith in your judgment in all matters.

Seems to me you are in a good place to gain your strength right now. Autumn is a time for slowing down a bit- as nature conserves and stores and bolsters her energy and strength for spring renewal and blossoming!

lupus-support1 profile image
lupus-support1Administrator

A speedy recovery Judes.

Fra22-57 profile image
Fra22-57

Oh bless you.all our thoughts must speed you home.

I totally understand your body reaction when the medication was withdrawn.I was in hospital a month couple years back due to being told to stop meds night n morning before a certain check up.My husband and sister said I was so bad they thought I would die.Our bodies get dependent of the drugs and react very badly if withdrawn.It will be a slow haul back up to better health for you.I wish you well soon

GinaD profile image
GinaD

Home is waiting for you! take advantage of the 24 care you have now so arriving home will be even better. Prayers from West ( By God, ) Virginia!

judes profile image
judes

Thank you for all your good wishes it’s kept me going on some dark days.

Tho when you think everything is going in the right direction something will come along and say otherwise.

I now have cellulitis in my leg which may or may not need iv antibiotics, I really don’t want to go back in hosp.

Somebody somewhere is having a laugh

J

KellyInTexas profile image
KellyInTexasAdministrator in reply tojudes

No...... 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

judes profile image
judes

Oh yes Kelly, I have a docs review in the morning but looks like I will be back in hosp for iv antibiotics🙁

I frequently have it in my left leg where I have clots etc but this is in my right leg

just for a change!!

I really could cry a river, but I keep telling myself I’m better than that! So, I phoned one of my brothers who always makes me laugh. On one of cruises we were at dinner Bro told a joke and we were all laughing so much I nearly wet myself! The rest of the dining area looked at us with total disdane which unfortunately made us laugh even more😋😋

Love and hugs

J

XXX

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