Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain Psychologist

Amy,
Begin tonight. Take care of yourself. You can do it. The next time I try the NSD- I want ot be hospitalized. Byt the 4th day I just wanted to die, and really thought the pain would kill me.
It all makes sense to me, because I hae felt that way too.
NSD- maybe a leave of absence, exercise as you can. See the answers are within you. The things you fear telling your mom, tell someone here. What I have buried through the years grew to be monsters! We control our destiny, take yours over!
Much love my friend,
Lon

Hi Amy

I wish you were not in so much pain. If only gentle hugs could take away the pain you suffer, I would be right over.

My thoughts are with you, and offer prayers that this flair ends soon.

Hugs

Gerri

Hi Amy

My sister is on a moderated dose of Prednesone, and has been for over 15 years.

She has RA,Lupus, and may have to have a lung transplant. She can never come of Prednesone.

Hugs

Gerri

Hi Amy,

A few years ago saw a pain specialist at the request of my g.p. He helped to set up my medications and gave me some other options in regards to pain control. Before my neurosurgeon will perform my next surgery, he wants me to have an assessment at a chronic pain clinic. My appointment is still a month away. It is a multi-disciplinary assessment with a g.p., nurse, pain psychologist, physio, OT and dietician. I am looking forward to it as it is a team approach that involves me being on the team. They will evaluate my meds, exercises, diet and daily routine and will make recommendations to assist me in all components of my daily routine. I have been told that after the assessment has ben completed they may recommend a three week treatment plan, if necessary. I would attend the facility every morning for 3 weeks. Historically, I was not the type of person that would reach out for this type of help, but I feel that I have exhausted my present resources and am interested in seeing what recommendations will come out. It never hurts to have a little extra help on our side. Afterall, this is a condition that we have to learn how to live with, and adjust to. I now feel that there is no need to feel embarrassed or insecure about asking for professional help. Think of it as a positive step forward in the self-management of your chronic health condition. I hope ths has been helpful.

Keep pushing forward,

loriann

Amy,
People, even professionals, want to believe that nothing really terrible (like AS, for instance) can happen to them. Because of that, they come of with reasons why this terrible thing is happening to you. If that reason does not hold true for them, they they are safe. Your affliction can't happen to them.

I have a child with mental health issues and you can't believe the absurd reasons I've been given for his mental health problems. Most of the reasons put the blame on me. You see, if I am a terrible mother and because of that my child is having problems, then the person talking to me will be safe from having a child with mental health problems because she doesn't do the wrong things which I do.

People want to believe that nothing really terrible can happen to them, so they separate themselves from the possibility of experiencing your pain by this method.

And when we are afraid and hurting and doubting ourselves we are very vulnerable to being wounded by these comments.

Tell your naturopath bullsh...!

Then, go and do whatever you need to do to help yourself. A pain psychologist might be helpful. Exercise might be. Changing your diet might be part of your answer also. You know your body better than anyone else; you can decide what will help you.

I hope you can get some relief from this pain soon. It's frightening to watch your body fall apart like this.

Karen

Hi Amy,

I started seeing one through arthritis society about 2 weeks ago. I was prescribed Lyrica that I have been taking now for a week without much improvement. I need to increase my dosage but I have not done so. It is worth a try but life style changes are the best thing we can do to help ourselves but it is difficult when dealing with chronic pain and fatigue. One day at a time.

You can find the information at www.arthritis.ca

Ali

Amy says:

******I figure there are several things that have to start happening - by that I mean me making a conscious effort to get better control over things in my life. I want to start going to Yoga, eating better foods, doing less at school because the school will still stand even if I decide not to work on all the committees or coach every team. There are other people around that can pick up some slack. Someone referred to me as the 'go to girl' last year, and it is seared in my head forever. I am not a go to girl! I do stuff because I love teaching and being a part of that community*******

Amy, from what I can tell from your posts and specifically from this above paragraph, you are going to be just fine. You are working through a lot of issues, but you are indeed working through them, and realizing that you need to do something different. You are a teacher and will be starting a new school year soon, methinks a very good time to start some new things for YOU as well. Again, I am an NSDer, and a mom of 3 kids, [one I homeschool, the oldest, and the youngest has Cystic Fibrosis, so we need to do lots of 'stuff' for her! not to leave out my middle son, you would get exhausted just watching him expend his energy!], my point being: I'm kinda busy, BUT over the last year, I have had to do a lot of stuff for ME, and that was hard to switch from others to myself. You are not Super-Hero-Teacher-Go to Girl!, you are you, and you need to do some things to help you. When I went NSD over this last year, it was a big change for me, I also just turned 40 this April, and even though I have medical issues, I have never felt better! My weight is great, my attitude is almost, great, and I feel much better. KickAs is an awesome community for support as you know, and the NSD'ers on the site are also very awesome in their support!

You are right, diet, and exercise, and a combination of medications, may be what you need. Go for it! go for the NSD or your own version of the same.

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!

Thanks so much. Yes Rita you are right, fortunately, I get two New Years as a teacher, two solid places to start something fresh with a new way of looking at things, the school year and new years. I am already making some serious diet changes, and I am committed to hitting the gym and taking care of myself this year instead of everyone else. I am no good to anyone if I am at home all flared up.

Like I said this has been a major adjustment over the past couple months as I am not used to feeling this terrible for this amount of time, to this degree. I never used to worry about what was going to happen, now I think about what would happen if I didn't work, who is going to want to be with someone who cannot make it up the stairs, can't start her car, hurts alot of the time (not that I am currently looking becase I am not, bad taste in my mouth from the last time)........stuff like that and that is a heavy burden.

Just coming clean with you guys and how I have been feeling. I know what I have to do, so I guess that is half the battle, I just hope the rest falls into place. I double hope that as I taper off from the Pred that my body stays calm and the worst of the storm is over this time and that I make the necessary changes to make sure I am doing everything possible not to let it get so out of hand.

I appreciate all the support and cheers. Thanks again!

Amy:)

Thanks Gerri! I appreciate the gentle hugs! Hope you are well.

Amy:)

Thanks for the support, I will look into that link you sent me!

Thanks,

Amy:)