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

I am a mother of three sons, two with ankylosing. Ages 19 and 24. Youngest started symptoms this past summer and his older brother diagnosed 2 yrs ago. Their father (deceased at 46 and aunt, deceased at 50), both of drug overdoses, both mis diagnosed. They.never got the help they needed. They lived in Montana and the AS wasnt caught. Im terrified, literally incapable to live life right now. My sons are in so much pain. Their lives are a daily struggle as is mine. Im looking at a future with nothing but pain and death and struggling to see the point to continue. Oldest has.remicade which helps but baby is just doing the insurance dance. Predniaone, methyltrexate, blah, blah, blah. Remicade x $ 100k per year per kid. Oldest on my ins. Gonna lose.it in a year and a half. What then?? IM struggling folks. A shot gun is looking mighty kind right now. Tho im not totally serious it does seem like the logical fix. I need strength of the likes few have ever had. I need to keep my boys alive. Help, please

Tkinnard,
hello and welcome,
please don't make a bad thing worse. There are many options other than suicide. Take a breath and calm down please, things will work out and in time you wont regret fighting the fight.

Thank you, as I am sure you can understand, the look ahead is whats terrifying me. I am on a plight to gain strength so I can drag my boys up this mountain. I am not a weak woman but am preying I can find a few good people to help push.

Tinnkard,
We do understand your fear, as well as the hardships that A.S. can bring.
I have felt helpless and hopeless at times. I think most people here have thought about escaping the pains of life at some point. Whether they admit it or not.
Unfortunately some have made the decision to make a bad thing worse.
I have talked to others here who have joined this group, the one thing in common is usually a sense of fear of the future.
By the time they find this group usually in desperation.
I assure you there are better days ahead.

I am so sorry to hear how much you are struggling. As a parent with AS with 2 of 3 kids also with Spondyloarthropathy, I can tell you that things do get better.

You mentioned that your older son is on Remicade. If Remicade is helping, but not helping enough, has he talked to his doctor about what else can be done? Increasing the dose or frequency of the infusion, changing anti-TNFs, adding a DMARD, or changing NSAIDS can all be extremely beneficial. Under the current health care laws, your son is eligible to stay on your health insurance until age 26. Your employer may require that you pay the full,amount of the premium. Most don't, but if that is the case, he may be better off purchasing a policy on the exchange. Depending on his income level, he may be eligible for significant subsidies to defray the cost of the premium. There is no need for him to go uninsured.

What is being done for your younger son while you wait for insurance approval? Exercise, PT, OT, heat, ice, pain medications, NSAIDs, and DMARDs all help to alleviate the pain, stiffness, and loss of mobility that AS sufferers face. Is the insurance company currently considering and authorization, or are you frustrated with the steps that he needs to take to reach the point that insurance will consider an authorization?

I have been through years of ups and downs with my kids health. Once you can get them onto a treatment plan that works for them, you will all be in a better place. One note of caution, what works for one son may not be the answer for the other. My kids are on different treatment protocols because that is what works for each of them individually.

Good Luck!

Does talking about it help? I really dont share very well. Family and friends just run...like Im contaguous. I put on a smile to spare them my dispare. Does keeping a journal help? What helps.. I live in my own painful prison and I know if I continue, im not.going to get much farther. Any advice helps.

Sometimes I wonder why, sometimes I feel like this is where I should be, the right place at the right time. Iam struggling, everyone here on this forum has felt very alone and scared at some point. Yet we continue up this mountain,
I have had a meltdown or two, but somehow someone here has given me a leg up.

Stormy,
Wow!! Really...you two. Thank God your here. Rrmicade does.help.my oldest. Hes on a good dose, working well. Takes.prednisone and Ibuprophen. Works a physical labor job, which is good and bad. Looking to get him accounting degree so he has . desk job in the future. Finances are the delay there...he meased up aid and needs to repay several thousand.
Baby was born with birth defect. No rectom...though somewhat fixed, lifelong problems. Now this...he is scared of the meds as most talk about birth defects. Wont take methyltrexate and scared of infusions. Oldest was the same way for 2 years. Just prednisone and suffering. Doc wont make a move until he gets his head straight. He cant hold any job currently as the pain is too bad.
Worried no one can afford private ins in 2 years and oldest works for a temp angency. Infusion center said not to worry, programs will help him if uninsured. But, Im worried. Worried about docs and script pads. Terrified opiate usage will come into picture. Fear no where to go but dead from there.

Talking about it absolutely helps, we discuss everything from financial crisis to foul smelling gas!

Elmerfudd,
This crap sucks...in all my visions of life and future, I never saw this coming. I dont know how to compartmentalize it. Right now, its consuming my soul.