Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Boy I needed you guys

I wanted to thank everybody for their support!!!!! I was so happy and pleased to find kickas and that was when I was doing well. I was just breezing along offering my support and advise where possible, but boy I am really glad I had you guys this week. I can't begin to tell you how much all your words of wisdom,advise and just plain love helps. I have never been able to describe to anyone the intesity of the pain when it gets bad, but you all know!!!! Now that of course doesn't take my pain away, but you do feel less alone. The status is, my doc started me on some heavy duty prednisone. I said I would never go on it again but I leave on vacation in the morning and that is the only thing that will work GOOD and QUICK!!!! I really should have gone to the hospital to get I.V solumedrol as that would have helped quicker. I will be on it for only 10 days, enough time to get me through my vacation. I see her in May and we will talk then. She has always been very good and will have something for me. I have decided no matter what I will not take the humira. My GUT tells me not to and I have lived my life listening to my gut. I am a big believer in INTUITION. I have been in agony at night and have come to the computer to read kickas(very comforting)!!!!! In a panic I e-mailed my rheumy at 4:30 this am and that is how I got the order for pred. I spoke with my parents today on the phone and was unable to contain my pain and sadness which really pissed me off. I try to protect them from that as they have dealt with my pain since I was 12 years old. Anyways I thank you for your kind comments about how I dealt with my kids. I really felt after the fact that maybe I shouldn't have done that but now I am glad I did.They are really great kids and are wise beyond their years!! Words cannot express my gratitude to you all. If I had the time and energy I would thank you all separately,but will do that when I get back from vacation. We are going to California, so I am hoping my pain improves.

Lots and lots of love to you all

Simone

Yaaayyyy!!!

I am thrilled that you have found some answers. It is so hard to weigh the consequences of these difficult decisions -- it is a heavy load for one person to carry. Sometimes you have to share that load and I think I speak for everyone when I say that we were all happy to help out.

Have a great time in CA. I hope your trip is restful and rejuvinating.

More hugs to you,
Stephanie

Hey, no problem!!!! Good for you for going with your gut. Usually your gut instinct is correct anyway. Hope the Pred works well for you.

Rox
SURIYAH!!!


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Hi Stephanie

These are tough decisions and the anger I feel about having to make them and the feelings of betrayal don't last too long, then I get into fighting mode. So thanks and I will let you know how things go when I get back.

Love Simone

I am a big believer in the gut, I don't believe it has ever let me down. We humans don't use our instincts enough, that is what keeps animals alive.

Thanks Rox

I am glad you made you decission on the humria.Take that vacation and enjoy you deserve it.Hope you pain starts to get under control.
Bradford

To the world you may be one person,but,to one person you may be the world.

Hi Jayne,
I admire your true grit soooo much. I am so glad that you will get some relief on the pred. and that will also buy you some time to figure out your next strategy!!! Way to GO. Jayne. My AS is identical to yours(constant chronic excrutiating flair..I was pretty much bedridden for five years, and am now doing well on Remicade) and I can't tell you how much your posts help me. I am now preparing for a possible end to the Remicade and am stratigizing as to what to do next. Thank-you so much for being so generous in sharing your pain with us. You are such a fighter and have such a beautiful family that obviously cares. Thanks for helping me with all your great posts and I HOPE you are soon pain free and on a fabulous vacation.
Liz

Thanks Bradford

I am determind to enjoy my vacation, with the help of the prednisone I know that will happen. I took 80mg of prednisone and it has already helped take that nasty edge off. Now my husband is waiting for me to go into steroid induced psychosis,as that has happened to me before.. As long as it doesn't happen at 35,000 feet.

Take care

Simone

Hi Liz

It is amazing how pain can be a tie to someone. In a sad and ironic way we are all bonded together with pain,sadness etc. etc. It does help to hear that others understand your pain. There is a chance that the remicade will continue to work for you. You may not build antibodies against it, so my fingers are crossed. I remember saying when I was on remicade and doing so well, that even if the feeling didn't last I would be happy to have the time that I did. When the pain came back with avengance, I thought to myself, "CRAP I want more-I didn't really mean what I said-give me back my pain free existance!" [growl](I was trying to find a mean face, but I guess growl didn't work) Anyways, this week I really came to terms with my anger and bitterness and am now searching out the next step. It is because of people like you that I didn't stay in that angry,poor me place too long.

So thanks for the support and kind words

Love Simone

Hi Jayne,
I have to admit, I do live in some dread of the pain coming back, but because your PMs have encouraged me to try to think what to do, I have made some very interesting choices and changes in my life to "be prepared" physically..even though emotionally I will FREAK OUT, for a while. When I say I relate so much to you, I really really do. You are one of the few people who describes your pain in exactly the same way that I experience mine. When I would go to my arthritis support group for a while, they would talk about good and bad days, and I would look at them and wonder what they were talking about. Then when I could hardly function at all, I would meet other ASers that were out working full time. While others would look at me in fear because I had fused. I was horrifyed and couldn't understand what was happening. Some people thought I was faking it or just not trying hard enough to get on with my life, like the other people with AS or disabilities. It was a nightmare.I even started to doubt myself. My mother still wont deal with it and they wont deal with the possibility of the Rem. wearing off. Now I see, even from this sight, how a variety of AS exists. When you talk about your chronic unbelievable amounts of pain, I know exactly what you mean..and the whole escalating feeling.I admire you so much for carrying on despite all that pain. I am soooo sorry that we are bonded in this way, but at least I feel less alone, and it helps me to confirm that I am not just 'not trying hard enough', that As can get to our levels, and I too was doing the best that I could. On the other hand, thank-you for your generous good wishes towards me. I am staying positive and am on the NSD. I hope I can wring out some more time on the Remicade..I am at 2 years and 2 months.I am stepping up getting all my dreams in while it lasts. I also (unfortunately)have some real fear about lymphoma...but am trying to just go withit. I was very traumatized by my last round of pain..so all these anxieties just feed into each other. I try to just accept my feelings, and i try to accept some of the more awful realities about life. I certainly dont want to court disaster either though. I was wondering if I should get a load of antibiotics ready in the fridge to try that route, if need be. I admire your emotional honesty too, especially dealing with the anger. I have had trouble dealing with that but am getting alot better now. Anyway, thank-you for giving me hope Jayne. Keep fighting and getting out of that pain and all the best to your lovely family. I am here for you day or night. I hope youare in a beautiful place on vacation now.
Liz