Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Ok ,,I'm back again !!

Hi everyone , Boy its been awhile ! it's going to take me a day or two to read some of the back post to catch up with whats been going on. Things are in someways better for me and others getting worse, . I'm now on Enbrel , its been about ten weeks now , seen some improvement some lessing of the pain ( at times) the big change is i'm sleeping better But i'm still suffering from the effect to my bad reaction to the Remicade ! Alot of Hand knee and foot pain ! they said these things would go away after awhile but the havent !.
Hmmm let see what else oh well had my six month doc apointment yesterday, was really surprised that i've lost 40% of my rang of motion in my neck over the last six months ! . i knew i had lost some but never thought it would have been that much !

I had to use a whell chair for the first time in public over the Christmas season ! Shopping with my family would have been imposible with out it. My Rhumie told me yesterday that i minght as well get use to the idea cause i'm not going to get better and its soon going to be come a fact of life ! Oh good news !! my oldest daughter is now attending St Lawerance Community Collage ( outside of Ottawa) studing Nursing ! I'm so proud of her ! i miss her like you wouldnt believe and still think my little girl is still to young to be living away from Mom and Dad . But she's living with my sister and her family and i know they'll look out for her.
My wife still loves me ! She's still putting up with me or i should say still looking after me. She really one of a kind and my rock. My youngest just turned 13 and is now going on 18 !! Geesh is there anyway to stop them from wanting to grow up so fast ! But she growing into an amazing , intelegent young lady , she has a great bunch of friends and still seems confortable talking to me about everything. So as far as my family goes things are good.
Well let me see depression has again been a real battle for me the last few months . I retired yes that right retired ! 40 years old and thats all she wrote ! i tried everything to stay working but in Ausest it got to a point i couldnt do any more even though it was an office job the pain , stress and the drugs was too much .
In july i realized that the work i was been ask to do had such potential to impact on other peoples lives , one mistake on my part would effect the income and lives of hundreds of fishermen and the families. Basicly i was the one who had th epower to open and close fisheries in my area. And i was responsible for thousands of dollars and my ability ( i thought ) to cope and keep track of all that was going on around me and the office was questionable . So i Retired ! thats where the depression came in , but i'm doing better thanks in large part to my renewed faith in Christ . I know thats most likely hard to understand by many but i have to say ( and i dont want to preach( but it amazing how things change when you let HIm take over when you let Him take on all the worries all the needs.

So anyway i hope to hear from everyone , i'm really looking forward to catching up with my friends on here and meeting all the newbies that i've never ment before. So take care everyone, God bless and remeber !! KEEP ON KICKING

Your friend

Martin

Hi Martin,
Welcome back. You sound pretty upbeat. Sounds as if things are going pretty good family wise. Good for your daughter going into nursing. There seems to be a shortage of them everywhere. Take care and keep on kicking !!

Sherri

Welcome back you are missed here among friends ..you sound great ...blessings and take care....hugs Pat

I'm so glad you checked in and that the Enbrel seems to be helping. Hopefully the improvements will continue and expand.

Needing the wheelchair for the first time must have been so difficult, especially when your doc was so upbeat about your ability to live without it in the future. I hope that he will be proved wrong, but if not ... hm ... at least your wife will be able to 'push you around' with impunity, eh.

As you know, I don't have kids myself, but I have two nieces who seem to be growing up much more quickly than my comfort levels would allow. I keep telling them to stop that, but they don't. Darnit.

It must be really something to watch your daughter grow into the woman she is meant to become. Letting go is difficult, I know, but she will come back and make you even more proud than you are today.

Many hugs,

Hi Kat Always a pleasure to hear from you, Ya things here are ok they could be worse thats for sure, But how are you ? what have you been doing to keep busy? I really interested in catching up with everyone. Drop me a PM or just reply here, take care

remeber ....

Keep On Kicking

Martin

Things are going pretty well here. The Remicade is still working a charm, thankfully as I was fearing it had stopped being as effective. Brian moved in with me in August and, thankfully, didn't turn into an a$$ the next day (as happened with Stephen). Things are going well at my job. I'm still volunteering with The Arthritis Society and am doing another hike to raise money for them in August (see "I'm Doing It Again" - my thread from last week). I'm still involved in theatre whenever I can manage (at least one show a year) and have also joined CAPA - Canadian Arthritis Patients Alliance, a lobby group, and will be giving speeches and such mainly about living with AS (I think, not really sure yet as I've only just become involved with them). And I'm writing a book.

That's about it.

It's good to hear from you my friend. I still hold out hope that I'll get out to the East Coast again in the next couple of years and will be able to meet you great Easter Coasterners (to quote Stompin' Tom) in person.

Many hugs,

Wow things sounds pretty good for you , I'm glad , you here so many stories on here of people having such terrible times in their lives its really good to hear some good new/stories. Maybe that should be a new area on here ? a place for good news only .
So this Brian guy ? If he steps out of line, you let me know ! cause i'll know a guy who knows a guy who knows this lady that will fix his wagon !!
But really, i'm so glad you've found someone, if anyone deserves someone its you my dear. You have been a source of comfort and support for so many on here.

Well got to go feed the furnace another arm load of wood , it must be -40 here today and my heat seems to go straight up the chimney ! Ah well that the price ya pay for living this close to the Atlantic!

Take care, maybe I’ll see ya in the chat room this evening ? and remember

Keep on Kicking


Martin

I am so happy that you are putting your life in Gods hands. He will never let you down.

May the Lord keep you in his loving embrace,yoly

Glad to see you here and doing good and your spirits are high.

Take Care,

Lisa

Hi Martin,

Good to see you back. I had a dr. tell me back about 1980 when I was in a wheel chair in his offie that I might as well get used to it; that it was as good as it was going to get. I kind of got up on my "high horse" and told him that I didn't know that I was going to get better but he certainly didn't know that I wasn't. And I left his office never to return. I don't personally want anyone to hang any kind of negative thoughts on me. I went home and started working at getting stronger and walked next door and laid on her couch until I had enough strength to walk home and did that until I could walk over and back and then I added a house. I did that "house by house" until I worked up to 1 1 /2 miles twice a day and I spent many a year with no wheel chair. I only use it now for very long outings. I believe "no one" knows our future but God and I think you addressed your beliefs about that also.

I just started Remicade on Monday and felt just terrible yesterday. Some better today. Yesterday I was wondering what I had gotten myself in to but I am hanging in. They tell me my reactions so far are reactions to be expected. They had to stop the infusion 3 times due to mild infusion reactions but I finally adjusted and got it all in. I REALLY want this to work. What kind of reaction did you have? I remember you having it but I have forgotten what it was.

Retirement is so hard. I had to go on disability at 43 and I would still go back to work in a heart beat if I could. It is depressing to not have a choice. I see people who are making plans and looking forward to retirement but when it is dropped on you that it entirely different.

The kids grow up SO fast and then the grands grow up SO fast. Life is truly a vapor and we need to enjoy each and every day. I am trying to only live one day at a time and not even think about the long term possible effects of the Remicade. Just the fact that my arm bends more today is such a blessing.

We are blessed with our spouses aren't we? I am glad you have one of those wonderful ones also. My sweet hubby is truly my other half. I would never make it if it weren't for him. I am happy for you and you sound like us with our daughters. Sounds like our family.

I am glad you are back. I know you will adjust to retirement and one of these days you will wonder how you ever had time to work. That does happen BUT I am wondering if I am just moving that much slower.

Blessings.
Possi