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While scanning through this board, I came across some posts made by spouses of people affected by AS. It's a strange role reversal for me. I find myself standing on the other side of the fence, looking back on where *I* had been many years ago - physically that is.

Early on in 2003, I lost my wife to Neurofibromatosis Type 2. I am still a member of the NF2Crew but doing little more than lurking there now. For many years I tried to be the best support to someone with a serious affliction. My condition paled in comparison. Now, though, my wife's fight with NF2 is over. Her body lost the battle, but her spirit won the war. She handed me the torch. What I do with it is my decision. AS has its own designs on what I should do. I'm not going to give up that easily.

Steadily, over the past year or so, my condition has taken a nasty turn for the worse. Just when I needed her most, a wonderful, caring lady named Gabrielle walked into my life. Her determination to help me has led us here.

As Gabrielle mentioned, we're trying the diet idea. It's too soon to judge anything. In the meantime, the fight with my medical insurance continues unabated. My rheumatologist says "give him Enbrel". The insurance company says "Make us - NYAAAAH!". I'm just running around in the middle passing notes back and forth, dishing out the bucks as I go. This is fun!

Grateful to have a forum like this,
-Emile

Hi Emile,...and Weclome to KA, too!!!

You have an very unique perspective having lived on both sides of a relationship affected by illness. I'm sorry to hear you've both faced the loss of a spouse. I can only imagine that kind of pain. Thankfully, you both found each other and are finding a way forward.

I can relate to your words that "AS has it's own designs". It's been plaguing me since I was just over 18, and now I'm 42 y/o but I'm still kicking. I could barely imagine what my life would've been like without it, but I've been getting a taste of it just in the last few months. I was fortunate that my doc recognised my case as severe, and I was able to start Remicade in early Nov. Wow,... it's hard to describe to people what it feels like now in comparison. I haven't felt this little pain in 24 long yrs. I hope at some point you'll have the chance to try one of the biologics, but those rotten insurance companies don't make it easy. Good to hear your doc is pushing for you though!

I hope the NSD will start providing some relief for you quickly, although for many it takes some time and patience. It works for so many here and is no doubt a less risky option than many medications. You should pop into the NSD forum for any questions or advice on getting started. They will be delighted to give you suggestions, and offer ideas.

It's good to get to know you both, and I look forward to seeing you around the site. I know you'll feel like part of this family in no time.

Oh, and it's always good to have another artist on board!
Take care,

mig

WELCOME, Gabrielle and Emile:

And I can't adequately express my appreciation for the kind support you are giving to each other, and hope that you will be able to join us in the NSD Forum; we can usually work out safe alternatives or at least figure out common food names by country.

I hope that Emile can enjoy relief very soon,
John



"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

I'm new here, though I have been kind of browsing for a couple of years. My husband was diagnosed with AS a few years ago...I can't even remember now because the years all sort of run together in a long daily fight to have some kind of normal life. We think the onset began closer to 20 years ago, so he just suffered for a long time, never really knowing why. Finding helpful meds are a constant frustration, and doctors have been unbeleivably unhelpful more often than not. Right now more than ever. He went by his pain management clinic to pick up his prescription two days ago, only to find that he had been dropped for "breaking contract". He was given a letter that was full of untruths about how he had been going to other doctors to get extra meds, and had been taking more than had been prescribed on a regular basis. All this because the pain Dr. cut his dosage without telling him, so he didn't realize it until halfway through the month, and wrote a letter asking if it would be possible to have the original dosage restored. As you can tell, we have been more than frustrated. This guy has been kind of passive aggressive from the beginning. Not only non-communicative, and unwilling to listen, but also billing the insurance for procedures he did not do, and downplaying the Rheumatologists diagnosis as if he really didn't believe it. Have any of you had similar problems with doctors? Anyway...i am glad to be finally on board...maybe it will help to have someone to talk to.

Hi LoriBelle

You may want to post this on the main forum. It gets a lot more traffic there, so you should get a lot more responses.

Good luck getting your husband help. I know what an ordeal it can be trying to help the ones we love. Especially if they are stubborn.

My son Eric has AS and Chrons. He had his 15th birthday 2 days ago, and I was "swept off my feet" by a fella here just over a year ago. That is the stubborn one

Welcome to KA...it is good to have another Lori here Dont forget, post this on the main forum for more people to see and respond.

Lori

Welcome to KickAS. You say you so badly want to hep him, your husband.
You HAVE. You love him and see him through his AS. I know because that's the greatest gift my wife and some other folks ever gave me.


Your efforts are not pathetic and you do ease his pain. Just because you are there. You, nor any loved one can make the aches or woes go away but they melt so far from our focus when someone truly loves us.

I apprecite your words. I'm sure if yo show your husbad your post so will he. It is a reminder to me of how much my wife has blessed me and how sometimes I take hat blessing for granted.

As for "sage hands' I've had AS for almost 30 years and m Mom and her Mom had it too and I'm no more nor any less sage than you. I feign confidence and someime it begets confidence in how I deal with AS, but I learn from every just dagnosed ASKicker or family member here.

Welcome.

Hi All,
I have posted on the main site before. I noticed this forum and decided to check it out. It helps for people to post here. To see that other people are going through some of the same things that you are. I have AS. I hurt a lot of the time. My flare ups are unforgiving. The pain is so bad I just go to my room and cry. On top of this, I am caring for my husband who has lung cancer and has had two strokes. It is easy for me to identify with both sides. As a care giver and as the person who is ill. My plate is full, to say the least. This is the hardest thing I have ever had to do. Not only do I have to deal with my own illness and life changes. But I have to care for him. Don't get me wrong. I love him very much. He is my whole world. He is fighting so hard to stay alive. We both work together to do everything. We have to or we will fail. Just love each other and have faith that it will all work out in the end, Also know that there is someone else who knows how much it all hurts. Not just your body. But, also your soul.
Stay Strong,

Rebecca

Rebecca, your cup is full and I'll be praying for you guys. I wanted to let you know that I personally know 2 people who have survived lung cancer, and a 3rd who's overcoming lung cancer metasticized from cured breast cancer. It can happen-I wanted you to know that. You need to hear the success stories.