You know as a tech support person I should know better about this site but sigh, I haven't learned yet. LOL Just typed a message and now it is gone and for someone who has fingers/hands issues it sucks! But, I wanted to know how you are all doing. Feeling good...? I know I have been gone for awhile, but life/work is crazy. Boys are doing awesome - they will be 6 months old tomorrow and an adjusted age of 2 months tomorrow. I am good, surgery in November. Tell me about you ...what is going on with you? Share, I do realize I miss all of you!
Hi Mat, Thanks for the update on your Grand children. So glad they're doing well ! Update on me. I have my 4th infusion over a week ago and finally seeing an improvement in my fatigue ! That's my big news.
Hey there, MAT! Great that things are going well for your family. I’m on my eighth Enbrel shot, and my fatigue and depression is much, much better. Feet still sore, and my knee is stiff (no no no don’t mention “Baker’s Cyst”). I go back to the PsA Clinic on Monday for a checkup. They should be pleased – I am!
It’s summertime here in the Canadian back country, and what a difference it makes not to have to bundle up every time I want to go outdoors. Of course, now we have to coat ourselves with bug stuff because the mosquitoes and black flies are vicious. Can’t win! LOL
Great news Seenie ! Glad you are feeling so much better !
Glad for you too, Frances! It’s pretty encouraging to feel the shroud of fatigue lifting, isn’t it? Wishing you more good things!
Frances said:
Great news Seenie ! Glad you are feeling so much better !
I'm preparing for an extended negotiation period. Seems my labs are showing an increase in liver enzymes. I am meeting with my rheumy tomorrow and her replacement (seems she went and got herself prego and is going to home school next year while she has the baby) I got the email last night with the warning "Don't make me come and get you"
Its gonna be a long, hot, DRY, summer I am afraid. I'm thinking I will not be able to offer the diclofenac as a sacrifice to the fermentation gods and quell the rumblings of the MTX gods.
Glad to hear the grandbabies are doing well.
Lamb, you make me laugh even when it’s not funny. The fermentation gods … but you do need to look after that liver. Take care.
tntlamb said:
I'm preparing for an extended negotiation period. Seems my labs are showing an increase in liver enzymes. I am meeting with my rheumy tomorrow and her replacement (seems she went and got herself prego and is going to home school next year while she has the baby) I got the email last night with the warning "Don't make me come and get you"
Its gonna be a long, hot, DRY, summer I am afraid. I'm thinking I will not be able to offer the diclofenac as a sacrifice to the fermentation gods and quell the rumblings of the MTX gods.
Glad to hear the grandbabies are doing well.
It's great to "see" you, MAT!!! I also love reading the updates!
My legs are doing so well that I've put the wheelchair and canes in closets, as I've not needed them for months. This is truly amazing for me. The Remi seems to be doing the trick. I went from every 8 weeks to every 6 weeks, and my dosage just got upped to hopefully deal with the neck/shoulder/hand stuff I have going on. Next week I'm going to start going walking as many mornings a week as I can to build up my strength. We leave for a 9 day vacation at Camp Calumet in Freedom, NH in three weeks, and I'm hoping to do some hiking there. We leave the day after my infusion, so I'm looking forward to a week of feeling great!
That's really fantastic Nym! I hope you enjoy your vacation.
nym said:
It's great to "see" you, MAT!!! I also love reading the updates!
My legs are doing so well that I've put the wheelchair and canes in closets, as I've not needed them for months. This is truly amazing for me. The Remi seems to be doing the trick. I went from every 8 weeks to every 6 weeks, and my dosage just got upped to hopefully deal with the neck/shoulder/hand stuff I have going on. Next week I'm going to start going walking as many mornings a week as I can to build up my strength. We leave for a 9 day vacation at Camp Calumet in Freedom, NH in three weeks, and I'm hoping to do some hiking there. We leave the day after my infusion, so I'm looking forward to a week of feeling great!
Hello everyone,
I got to see a new Rhuemy, my other one has left the area and he passed me on to one of his protege. I was never happy with my other Rhuem's manner or his 7 minute appointments but I learned to accept he had been a Rhuem for so long, his assessment and treatment was like second nature to him, it was a shame he didn't take the time or trouble to explain more to his patients who don't have his knowledge. All my notes were sent on to my new Rhuem, he went over my history thoroughly and did not rush me. This one gives all his patients an email address if we need to make contact in between visits. I had to go through a first visit again which cost me $260 aus. I should get about $160 back from medicare. My blood results went to the old Rhuemy and he will chase them up.
I feel now after 5 months on Enbrel I have improved, maybe not as much as I had hoped but I am grateful for whatever improvement I can get. My blood tests have to show above 10% improvement to stay on Enbrel and my previous only showed 10% with a bit of a push to get me over the line to stay on this med. I have been left on Enbrel for another two months until the next blood tests, so maybe not getting the blood test back might have been in my favour, it feels as if I have improved even if it is not much since last time.
I do have more movement with my fingers and can almost close to make a fist, my pointer fingers don't close properly with the rest of them. I do think a lot of this has to do with the reduction in swelling as I have now discovered that I do have knee caps which I can now see and feel now that the swelling has gone down. The best thing is that my Plaque Psoriasis has almost gone after 18 years, the worst was on my back and covered most of it. I do want to be able to stay on Enbrel especially when it almost got rid of my Psoriasis, but I know they won't allow this med just for that. in my part of the world.
My feet won't let me stand or walk on them for more than 20 minutes at a time and then I seem to need another 20 minutes to rest them before I can walk again. I get through my days this way until I get too tired to get up and do more.
I was hoping to do so many things now that I have retired but I do consider myself better off than others with PsA who struggle to go to work and are still bringing up their children. I am home most days or for most of the day and it does not matter much if things don't get done when I live on my own. It does severely affect me being able to socialize and leaves me feeling very isolated a lot of the time. I would move into a retirement village so I have companionship but the real estate market is still so bad and I can't afford to loose so much now that I no longer have anymore pay days and rely on the aged pension.
I mainly order my groceries on line, I shop on line when I can. Just as well I live in these times and have a computer and the net.
My eldest son now 39 made a surprise visit and stayed over night last weekend. I don't know if other mothers feel like this, but for me it is so precious to me when I get to spend time alone with either of my adult sons. I still love their partners and their step children as well, it is just different and so much more special when we have each others undivided attention.
My youngest son, now 33 is also coming to visit from interstate and will be staying for a couple of weeks. He has offered to do some house painting and minor renovation work on my house, his partner will be here for some of the time but I will still get to have him to myself for a while as well. I am so looking forward to seeing him. Even though I keep in contact with my sons over the phone, it is always very special when I see them in person and give them a big hug. One sure way to lift my spirits.
Frances, great news, I'm glad the infusions are working for you! Seenie, that's wonderful news, so glad you are feeling better. Watch out for those bugs! Lamb, oh dear I hate to hear that you may have a long dry summer. I personally keep staring at the bottle of vodka in my freezer everytime I open it thinking that I am going to make my very favorite summertime drink (an ice cold vodka tonic with lime) one day soon! And Nym that is amazing, so glad to hear it! I hope you have a wonderful vacation! Bella, enjoy your visit with your son! I do love spending time with my daughter!
On and the grandbabies didn't suddenly gain 2 months, they were 4 months old on the 6th, silly me! Hope everyone has a great weekend!