I was wondering about a golf cart...doubt I could find one here in Bali tho'. It's about five miles to the nearest shop...oh how good that would be. I do have a car and driver but getting me up into the car is a nightmare...it's so high off the ground. So I hang by my left arm and grab the drivers seat with my right and sorta swing myself up...I watched the local monkies for instructions as to how....then my old wheelchair gets slung in the back and off we go rumbling down the mountain side...The big supermarket is 10 miles away....we go there rather than the local market as it would be impossible to navigate around the holes in the dirt there and the wet season would be a trial. The supermarket aisles are so close together, it's a bit like a Robin Williams movie ( bless him )...avoid the boxes the staff leave in the aisles...or wait for a shop assistant to move them...Get my grabber stick from the pocket of the wheelchair...and use it to get items which are too high for my arms...being careful not to grab bottles and such like. We have learned to be a sort of train on our way round....My daughter pushes me in the W.Chair and I push the trolley in front of me...swerving round corners is risky tho'...All the staff say hello to me as I've been struggling with this for many years...but they seldom help me.....Little kids stare at my predicament..and I'm tempted to say " BOO" to them...but hold my mouth as best I can...Shopping is a massive ordeal........Give me a giggle please everyone, I'd love to hear your stories too....Hugs...Gloria
Yeah, I get them as well. I guess some or most mean well, but it still gets annoying. Another thing I have noticed, when you get a disease like this- you find out who your real friends are. One of my best friends for over 20 years lives 10min. away from me. Since I've been what I would call really sick, hasn't spoken to me once. I have been on methotexate(chemotherapy, I know not like a cancer patient would be) for over 6 months. Not one call, hey how's it going. Nothing. Thanks man, when you were in jail for being stupid( not what i would call a criminal just dumb stuff). I stopped by your Mom's house and carried groceries in for her. I babysat your brother when he went through detox. Not one- How are you? No wonder depression and social issues are a problem for people like us. He was on of the people I could have used some support from. oh well-movin' on!!
Yes, this is the sad side.
Move on, Hope is a great friend, look for Gloria in Bali, she will keep you in stitches!
Me, I gotta figure out which four inch heels I wanna wear this weekend. an advantage of being a roller.
Welcome to our wee group!
judith
65, 54 with juvenile rheumatoid
on Rituximab infusions
I learned early on...never to shake hands with anyone...so I decided to do what the younguns do...and offer a small punch like greeting with my hand...it doesn't hurt so much...I'm thinking of asking the manager of the supermarket to free up one of the staff for me once every two weeks for an hour or so...as a "pusher"...Good customer service....and maybe the news might get around that this supermarket is the best for customer relations amongst other things. Better change the "job description" word tho'..in my day "pushers " meant something quite unsavoury....what do you all think...I could hang a sign round my neck..." Pusher wanted".....lol...
Hey...why not throw a small disabled party for those who have ignored you for so long...Invite the ones most likely to benefit from seeing and learning what AS is about. On the invitation..state that your condition, although serious is NOT contageous...and you'd like to re ignite your friendships with em all....Then you'll see who really matters....eh... My son died from AIDS many years ago and I lost all my so called friends.....the world is full of Bu.. sh..Lets do something positive to heal those who need it more than we do....their minds that is....Hugs and love..Gloria
Excellent..lol..Thanks for the welcome!!
Great ideas, Also my condolences. Thanks for giving me what you can. Totally appreciated, I already find myself looking forward to see these kind of responses when I get home. Peace, Indi
Peace to you!
Gloria!
the site has been wonky...tried to respond with lots of words and nothing would go through
here I gp trying again. .
Yep I do the same it does hurt people really grip on their shakes. So even with doc I pump fist and the ask why germs I say no pain!
sorry to hear that some people are so selfish. A hard lesson for most. It takes time to get thru . I wish you the best and hope low dose MTX is helping .
Heeling blessing sent ur way.
I looked up the drug and it treats many health issues.
Rituximab is a monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells.
i hope you are well and doing better on this drug.
Take care are and keep posting.
ey Hope,
Wow, you are up on meds!
So another lesson here is that arthritis morphs. This is why we have so many biologics.
Enbrel eas the first...mid nineties ..a TNF...tumor necrosis factor
Humira is also a TNF
So for those of you who respond to either Enbrel or Humira, we know your arthritis is TNF driven.
Look at Hope's review of Rituxan AKA Rituximab . it is a mono (1) clonal (clone) anti (against) body which attacks the protein named CD20. CD20 is found primarily on the B cells surface of the immune system. So now we know my arthritis is CD20 driven. This explains why Enbrel and Humira will not be effective against my arthritis.. .TNF versus CD20
While one can self inject several different arthritis drugs, Rituximab is an all out infusion.
I have a BARD power port placed under the skin just above my right breast. The line from it empties into my right jugular vein. This port is used for all blood tests as well as for IV drugs. That means I can not have blood drawn at the doc's office. I have to go to an infusion center located within a hospital
I had a 1000 mg infusion last week and the next one is Nov 2. You take antiadverse reaction medications the night before, and the morning of. At the infusion center they will run in Solumedrol as an additional protection against adverse reaction. The entire process requires you sit in a chair for 7-9 hours.
Stay cheerful, be positive, laugh a lot, shine kindness
warm regards
judith
Yeah, I think you may be more knowledgeable than my rheumy. lol
No joke!
Funny how many things the metho. is good for isn't it. Pretty sure it is actually helping, no major side effects-so far(fingers crossed). Thanks, for the Blessing, right back at ya.
Judith, after reading what you go thru, I'm like holy s*%$. Then to hear you talk the way you do, if your not the definition of inspiration, I have no idea what is!!
Oh Indigoods,
You kind, thoughtful words bring tears to my eyes. Thank you, thank you so very much. Indeed, it is an honor to be thoyght of as inspirational.
warm hugs
judith
Anytime, Judith. Thanks for being there, or here I should say. Also hats off to hope, kay and gloria. I had no idea this whole forum thing would help as much as it has. The 4 of you have helped my perspective soooo much.
Feel like a different person, I was in a really dark place for some time. Now it's not so fuzzy around here!!
You are most welcome to our forum cuddles....we might need you one day..if we're feeling low...it happens on this roller coaster ride. BTW...I found a site that has helped me to gently excersize my fingers so they don't cease up altogether.. Don't laugh but it's an adult colouring in site...with flowers, animals, and all manner of things..I bought myself a set of crayons and texters...and I'm off on an art trip now....just sitting by myself..it's a sort of stress buster. Very theraputic...just type in " free colouring in pages".....it's a wizz....print it out and off you go...Hugs..G
A coloring book...saw one in the grocery for $10...I left it there..
why do the kiddies get a cokoring book for $2.00 and we have to pay more...
Ladies, hold on to your panty hose...today me auto insurer sent me a Happy 65 Birthday refund check for $52.00 and reduced the insurance by $105.00 per year...should I frsme the check or cash it...like to have fallen over I was so shocked
toodles
judith