Another update: Well what can i say i... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Another update

Beckyl1 profile image
5 Replies

Well what can i say i am now on riveroxaban ( not sure i spelt that right ) which was a blessing in disguise as the enxoparin was upsetting my liver and was the suspected cause of my anemia which is now gone, i am on the gabapentin still and take 3600 mg split over three doses, this dose is helping take the edge off on a 'good' day.

I am awaiting to hear about my chair as the first occupational therapist said i need a transfer chair, but when the wheelchair woman saw me and assessed my range of movement she said i need a self propeling wheelchair but would require a powerchair in the near future, but she has to get permission from the various professionals who have been involved with my care, then she can order the chair and the back supports, then do a home visit it is such a long process, i would get some independance back when outside and indoors on really bad days when crutches just dont help. The social worker wants me to have a carer come in twice a day, but im not going to at the minute, well i have to go so stay strong, stay calm, give yourself a little time to be gentle on yourself, take care everyone xx

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Beckyl1
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77tiger05 profile image
77tiger05

They won't let me drive anymore and I am a B/K amputee due APS so I live in my power chair.

Make sure you get one with some power. I have been through enough of them that it makes a huge difference. At least 6-7 miles per hour. Good luck to you I know that the process can take forever!!!

MaryF profile image
MaryFAdministrator

Hi there, I am really pleased to hear about your clear progress, and how you are in charge of handling it all, best wishes to you, and I am very uplifted to hear that the right people are sorting out the right drugs and equipment. Please have a nice day.

Mary F x

Beckyl1 profile image
Beckyl1

I will certainly have a good go at having a good day, my eldest step daughter, her partner and their son and kitten have moved back in and are getting married on 20th october so wedding plans are well underway although costly as she is also 18 in september eeek any ideas of presant ideas anyone ?????

Beckyl1 profile image
Beckyl1

Hmmm think it is too late to ask for powered wheels, as it is already going through the NHS system as originaly i was perscribed just a attendant chair but when i went to the assessment she said a self propelling chair would be better, i tried one out and did ok on it (i think she did in hindsight mention something about power ones but i was rather foggy) hills could be a big problem as i dont have a whole lot of upper body strength, as for cars it doesnt matter as we are selling our car but as i found twice over the last fortnight getting into taxis and getting out is really difficult and painful the first time scared me as the floor was wet and my weak side well went without me im so lucky my husband was able to take the strain.

Beckyl1 profile image
Beckyl1

I should point out the last post regarding the taxis i was lifted onto the seat by hubby so chair could be folded as there was notenough room as eldest step daughter and baby were getting in too with her pram

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