Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need help!

I have to run a few errands but will come back later. I really, really am grateful you are all here. Im so sorry you have a cause to be here though. Thank you!!

I would first take suicide off your plate. Get rid of the shotgun,
they are only good for rabbits. This isn't stealing your soul, one pull of a trigger surely will. And it will cause more pain to your family than A.S. ever could.

Hello and welcome.

When I have been in my worst flares, when my pain is at its worst, its important to be in the moment, just focus on the now. Don't even think past that or it will do what it is doing to you.

And when I'm in that much pain, even now on occasion on Humira, I can feel my mind starting to wander to bad places (worry, thinking things won't get better (but they always do), etc); I just have to force myself to not go there.

This disease sure tests our patience. But hopefully seeing your eldest getting some relief from the remicade will help you see that there can be a future better than the present.

It can take us a long time to get diagnosed and treated; many of us have been there. But eventually, like for your eldest, things can work out.

I will be back soon also, I am heading home from dropping my daughter off at work. She also made some money mistakes that we are working through as a family.

Do everything within your power to get them both off prednisone. Long term use of prednisone is a much bigger risk to their health then the anti-TNFs or DMARDs. MTX has it share of concerns, but most of these apply to cancer chemotherapy dosages, not the amount he would be taking to treat AS. Of course, he needs to be monitored closely by his doctor, not drink alcohol, or conceive a child while on MTX. (Birth defect risks go away when you go,off this medication.)

I can understand the doctor wanting your son to "get his head straight" before prescribing biologics. This has to be a decision that your son is capable of making and is comfortable with. Have you considered having him see a therapist? Mental health counseling could significantly help him gain control over his fears and emotions about this. Both my kids have had help over the years accepting and adapting to their "new normal." Both are happy, healthy, well adjusted young adults. (One is in college and the other in graduate school.) they are working toward their futures and, most days, you can not tell that they have medical issues.

Worry about affording health insurance when and if that time comes. Fretting about it now is not helping anyone. If your sons will need to purchase insurance on the exchange, their income will be factored in. Very low income people qualify for substantial subsidies - making the insurance very inexpensive or even free of charge. There are also currently assistance programs for the uninsured, but those may well be gone in a few years when nearly everyone is insured.

Concentrate on getting them healthy today. Once they are in a good place health wise, they can worry about tomorrow. Don't fall into the trap of being so concerned about the future that you are not helping them live fully today.

Hello there,

Yeah... AS sucks, like most other chronic pain conditions. A life of pain does not seem like much of a future, but many here have been there and many of us are still kicking.

I fell into a great depression over 10 years ago... but my life is extremely good right now. It helps to find answers, so my suggestion for those that come here for the first time is to learn all you can about AS, the treatments and make a personal decision what may help.

There are medications, alternatives and even diet. I would consider tackling the AS with as many options as you can.

Medications you can talk with doctors... there are the TNF meds, I had good success with azulfadine for a while and another med I see more on recently is LDN.

There is a diet many here have success with, the No Starch Diet (NSD). I have been on it for 13 years now after I had to come off of medications. Even if this does not interest you... a healthy diet void of soda, junk foods, most processed foods should be strongly encouraged... garbage in/garbage out and there is more and more evidence that AS is tied to the intestines.

Some alternatives include fish oil, probiotics, yoga/stretching and many more.

Take the time to learn... take one day at a time. Your sons should learn as well.. it is their bodies and their lives.

My father had AS.. passed away at 66 from infection after operation.. but lived a full life as teacher. He was fused entirely in back/neck.

I have lived with AS since early 20´s... that was over 20 years ago. I am doing very well now thanks to No Starch Diet.

Hang in there, find answers... hopefully the answers lead to a light at the end of the tunnel.

Tim

Welcome Tkinnard,

As Dotyisle said there are medications and supplements that can help if you have time you can read some of our stories in more detail and see how many AS patients eventually find a way to reduce their symptoms and lead normal lives.

Some even say they got rid of AS entirely.

Tkinnard,

First off, you are not alone. Many of us have been in your shoes and know the disparity of this disease. I think for the boys to get better, mama needs to get better. I found a good therapist to just help me deal with the problems that a chronic illness can bring and she was worth her weight in gold. I bought a notebook and learned how to get up every morning and pour my heart and soul into it and was surprised how many answers I found just by doing that alone. Nothing fancy, just write out three pages of what comes to mind, put it away and get on with your day.

Please don't be afraid of what future drugs you and boys may have to take. They are all out there for reasons. This can be a painful disease which can really mess with your mind and make you depressed. I would suggest finding a good therapist and a good Pain Specialist. The Pain Specialist really help control your pain and make you think straight again. I eventually needed a pain pump implant to control my pain as everything else had not worked but boy am I thankful that was an option. Sure changed my life. I have my life back.

As Tim said, get schooled all you can on this site about diet options and supplements. They have helped many people here.

From one mother to another and a fellow A.S.er, I hope this help's you to find a place to start. If you need any of us at any time feel free to send a pm or personal message to any of us and take the thoughts of suicide off of your plate. There is help my dear.