it's me: Jet here -sorry that i havn't... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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it's me

jetjetjet profile image
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Jet here -sorry that i havn't to active--- lot's on my plate- many uncontroled things in my life, 1 st - surgrey went OK but not what i needed for the out come ?????? so next step is the other surgrey- complete hip -- i was not a good person for this procedure? BUT the things that were a big problem are not so bad now , because every thing went great !!!!!i can now have a total hip replacement-- of course the risk factor is still high-- it's do able--- but i need to do it right now so there is no more of the problems getting any worse. i will know more on the 24 th of this month. It's good to know that every body is still there and concerned of all my well being - for this i am very gratefull. i had a problem this past week of a wasp sting- never had a problem with this till now -- landed in E.R.friday -till sunday night. they needed to listen to me as the doc's didn't know to much of A.P.S.-- it was a fight but they did listen to me and contacted Lebanon about the things they can do and not ?1?1>/1 i'm doing ok but it was getting a little scarey- gettig to close the the limpthnode glands in left arm pit ---- they did manage to stop it , but WOW it was close--- i am doing better now , am at rest with everthing !!!!!! things looking up :-) we all have our own problems to bear ?- i guess that we all have each other for support. sorry again for not being there for the rest of you ;-(. i'll try to be better__________________ a little red --some what itchy - mswelling going down -- no more pen marks at least for now ---- me ----jet

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jetjetjet
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7 Replies
jessielou profile image
jessielou

Hi jet

Good to hear from you hon, I know you been having so much going on, I hope you are getting over the wasp sting and feeling better, glad it stopped spreading.

It seems there are a few of us who react badly to insect bites and stings, our over active immune systems I guess.

A brave move going through the full hip replacement, I hope the med teams cover after care and make you rest. Know you'll be ok hon, your a fighter.

Talk soon, if I can get hold of you.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

GinaD profile image
GinaD

Good to hear from you. I am in the midst of my own hip deliberations. I'm off to Duke Med Center next week, ( I read it is THE place in the Eastern half of the US for APS,) to try and sort things out. The local rheumy says I have sacroillits,. He thinks. But he won't do the final diagnostic test to confirm. And he won't even speculate on the possible causes of my sacroillitis. It is possible that a hip replacement is in my future. Or not. But I am most interested in how things shake out for you. ( and this sounds distressingly self serving. Sorry.)

Good luck, and best wishes!

Gina

in reply to GinaD

Good luck Gina keep us posted!! HSS in NYC is also great but further away for you.... You will be in good hands!

jetjetjet profile image
jetjetjet

hi -Gina - there is a doc there by the name of Nancy B Allen-- she is ranked very high in top 10 in the country ! i have her info if you would like? let me know---jet

GinaD profile image
GinaD in reply to jetjetjet

Dr. Allen is not able to rake any newbies, so I am scheduled to see Dr Kaul.

CanaryDiamond10 profile image
CanaryDiamond10

Jet- I'm so glad you're feeling better body, mind and soul and that you have a future plan you seem comfortable with. I am a little surprised they are doing a total hip replacement. They usually do one, with 6 weeks therapy (mostly aqua) and you live at the rehab facility. They wait and see if the body rejects it. Then they do the other side, with another stay in rehab. The gentleman across the street just did his, He said it was like an assembly line! They just have so much ortho work here as they have a large, elderly population. There are doubles for different reasons though and I am not familiar with your case, however, if you are pleased with what your appointments rendered you, I am happy for you. If you're comfortable with the plan, it's half the battle. When I worked in neurology for a neurosurgeon, I used to tell the patients to get on the internet and see if you can talk to other people with the same problem who went about the same strategy. You could ask the surgeon himself if he knows of anyone that they could anomonously arrange for you to speak with. I connected many a patient for permanent pain stimulators placed in their backs. Once you talk to someone whom has been through a similar situation and you can ask the main question "Was it worth it to you?", truly it weighs heavily in one's future decision. But... it also depends on just what you're made of. You sound to me to be a very strong person, who has so very much to give and does so every day it is possible. Good luck. Smiles, hugs and prayers. I'll keep you in my prayers and follow you on the site. Canary

Jet! Was good to see you today! Thanks for the ride to the docs and introducing me around to everyone. Glad your arm is looking better than those pics you showed me. I am beginning to think you are turning to Lobster Man!! New England needs their own super hero so maybe bright red isn't so bad afterall!

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