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I haven't been on line in many many months. Today it feels like this is the only place to find understanding. My husband as AS. He has been in a "flare up" for two years. He has been unable to work, the insurance company says there is nothing wrong with him, we can't afford the drugs the rheumatologist says will help, yesterday he got a walker. It feels like all our dreams have flown out the window. I'm only 37, my husband is "disabled", we have 4 children... Where does it end? How are you supposed to keep your sanity? The pain meds even keep intimacy at bay, which is leading to a major depression for him let alone me. No one seems to have answers...beyond that if AS hasn't gone back into remission after this time period, it probably isn't going to. HELP!! I think I'm losing my hold on life as it is supposed to be.

Hi Melissa,

Sorry to hear you two are going through such a rough time battling AS. It can be so awful to live with.

But there is hope! If the insurance company is unwilling to recognise your husband's condition, at least his Rheumatologist is. If the Rheumatologist is suggesting your husband try one of the newer biologics meds that are so costly, then there is a way the govn will help you afford it, in Ontario.

I'm self-employed (and therefore uninsured) and this is how I gained access to Remicade, which has improved my AS dramatically!! I applied to Trillium, our Provincial Drug assistance program,... and my doctor applied at the same time to the govn on my behalf for a 'Section 8', which is also known as the Individual Clinical Review process (ICR). The Section 8 determines your eligibility for biologics when all other meds are failing to help.

If he is approved under Section 8, then Trillium will cover the lion's share of the cost. You'd have to pay a quarterly copayment that is based on your 'family' income. I found this to be an affordable and reasonable amount, and the copay can go towards a tax credit also, if you spend above a certain amount on healthcare expenses annually.

Now, where to start. You can pick up an application to the Trillium program at any pharmacy in the province. Just ask.

Have your husband make an appointment with his Rheumy to discuss the doc's willingness to file for a Section 8. If his Rheumy says he is not able to, ask the Rheumy to refer him to an alternate Rheumy who is familiar with this process and would be willing to help him. Your husband's condition sounds bad enough that he should easily qualify, and his Rheumy should be fighting on his behalf with the insurance co., and/or offering this route to access these meds. And don't take no for an answer!

You can read more about this here:Ontario Drug Benefit Program, see 4406-87 and 3693-87.

If you have any questions on this, please feel free to send me a pm and I'd be happy to try and help in any way that I can.

Hugs,
mig

My sister just e-mailed me this little ditty.

Dreams Are More

Your life's dreams are more than just places to go, people to know, things to acquire, and experiences to have. Your dreams express who you are.

Behind every dream is a purpose. That purpose is and always has been, yours.

And so, in a very real sense, every sincere dream you have is already yours. And you are already in the process of living it through.

The tokens and outer appearance of that dream may not yet be completely manifested. Yet within you, that dream is fully alive and real.

The more time, commitment and energy you give to that dream living on the inside, the more solid and apparent it will become on the outside. There is no need to wait for your dreams to be fulfilled, for you can begin this moment to fully live and express the essence of those dreams.

Your life's dreams are valuable not so much for what they get you, but rather for how they express your own unique purpose. Live that purpose in every moment, and you'll know that dreams really do come true.

Ralph Marston

With AS our hopes and dreams may change directions many times. But as you and he work on getting the AS managed better, and I have every faith that you can, you'll once again find those hopes and dreams in places unimagined.

best to you both,
Klem

Hello Melissa,

Seems like Mig's (Melinda's) info may be helpful. Keep pushing with the insurance company sooner or later something always gives.

SOmetimes these flares seem hopeless. SOmetimes its more than a flare but over time changes can be made to med's or foods or lifestyle that get us all going again.

Is the pain in his legs, sciatic or is it in the hip itself.? What med's has he tried or been able to get? What other changes or courses of treatment has he tried?

I've tried everything under the sun and on different occasions difeerent things work ? Maybe just talkin out here what he has or has no ttried might help with others tossing in ideas.

I've gotten relief from acupuncture, massage, the dreaded NSAID's, exercise and many here will tell you when in a hopeless flare a dietary change to the No Starch Diet may be a solution. SOme folks here seem to have had huge succes with it and if things are so bad for him now maybe its an economical chance at getting painfree.

I've been hopeless lors of times. I'm noly a little older than you and I;m guessing your husband. I've had surgeries since my twenties and pains for decades that never went away but life is still good for me despite the occasional sadnness of a setback.

Don't feel hopeless too long.

Thanks for responding. We have been down the Trillium Foundation road already. Denied. 4 times. Apparently he has not tried enough meds yet to warrent government assistance. They want him to now try the ones already tried only this time they want them to be injections. MTX, sulfasalazine, etc., etc.

In response to Steves questions, his pain and inflamation is in his left foot (toes & ankle), left knee, hips, lowerback, neck , right elbow and wrist. To give you an idea of spinal change, I married a man who was 2" taller than myself, he is now 3" shorter with a distinct curature to his upperback/neck area. This has occured in the last 18 months. But just ask the insurance company doctor and he'll tell you this is not the case. He says there is NO indication of disease, and no reason for any pain. Genetic markers and previous history with the disease be damned.

We have tried some diet modification, but found it difficult to maintain with 4 kids in the house. Just found out that the meds he has been taking are starting a cumulative effect on his body, high cholesterol, borderline diabetes. Talked to a dietician and his diet shouldn't be the cause of this so what to you do??? can't stop the meds...He has been in a foul mood since finding this out. "What else could go wrong"..."I told you I had this disease, you should have run in the other direction"..."This isn't fair, to any of us"... He is right, but what can you do? Maybe Christmas looming on the horizon is weighing on him. He grew up in a household of seasonal extravagance. Last years modest one depressed him. This year is going to be the same. He truly feels that this is harming our childrens outlook on life.

Oh well, thanks for letting me dump on you. I don't know anyone who will listen. It is amazing how fast friends run away when someone is in ill health. Is it just that they don't know what to do or say?

Hi Melissa,

I'm curious what part of Ontario you live in, and if you're within a reasonable driving distance to T.O.?

I'm under the impression that the Trillium program is not allowed to deny anyone financial assistance with medications, although the Individual Review Process (Section 8) docs could deny to approve him for a biologic if he failed to meet a certain criteria (based on his current health status and medication history). If he has already tried Sulfasalazine and MTX then he should qualify without needing to go on an injection form of the med, as long as he has tried and failed on a couple of nsaids also. If his disease cannot be controlled well enough with meds, and there is xray evidence of disease, then he should qualify.

His insurance company docs should not able to overrule his own Rheumy, and if his personal Rheumy is not being helpful then perhaps ask for a referral to one of the arthritis clinics in T.O. (such as The Martin Family Care & Arthritis Research Centre within St. Michael's Hospital). St. Michael's and Toronto Western have the top Rheumys in the province. I'm sure they would reassess your husband's health status and history and be in the best position to submit and gain a Section 8 approval, if that is their recommendation.

I lost 3" in height and have lived with this dreaded disease for almost 25 yrs now. It can get very depressing at times I know, but I've also found that when I've been at my worst and lowest, things always have a funny way of improving again just enough to squeek me through the roughest patches and make me want to go on with a smile and not let the AS beast win. Finding ways to enjoy myself despite the pain is not easy and even harder without the support of friends and family. Focusing on the many things I have to be grateful for, or the wonderful friends I'm lucky enough to have in my life really helps. Tho many/most of us have lost some friends along the way, sadly. I think for many healthy folks this level of pain and fatigue is nearly impossible to understand, and some sort of fear(?) prevents them from sticking around.

This is one big reason KA is sooo amazing. You can read about so many here who are battling the same fears and trials and pain, and really feel a sense of connection with others who 'know'. Many of us are not the 'support group' types generally, but just knowing there are so many around the world fighting the same fight gives me a sense that I'm not alone... there's power in numbers. Please dump on us anytime you feel like it Melissa... we're always here.

Hugs,
mig

Hi Hamilton,
We haven't met yet and I am not the most consistant person when it comes to coming on and chatting, however, I am glad I checked in. Reading your post was like I wrote it. My husband also has AS, I am 39 & he is almost 42 so I was your age when it all started getting bad. We like you also have 4 kids and Mike (my husband) can no longer work, he hasn't now in 3 years. We also went through the whole doctor and insurance thing where they basically told him it is all in his head. He also shrunk 2 inches since we got married, like your husband. Anyway, I don't know anything on how the medical/insurance companies work in Canada, that's where you are right? But what we had to do is go through a few doctors, get state assistance for the insurance and prescription costs, we also got denied, got it, got shut off, reinstated etc. Then the Social Security disability fight.....Augh! Anyone that knows us here, knows what a battle that has been, 3 long years. We finally just recently got his retroactive money and are told we will start receiving a monthly check at the end of December. It has been a long hard road, not to mention as you said, the depression he went through, the grieving we both did because of how drastically our lives changed in so many ways. Then there is the emotions the kids went through, their fears, their anger, the sadness etc. All I can tell you is what helped us most in that first year is our faith in God, many prayers and the support of the people here. In the beginning, the extended family didn't understand, I think they thought he was exaggerating or whatever and like you mentioned, some of the friends kind of flew the coop. I am not sure why, maybe it is "weird" for them, I think it's kind of selfish, but that's just me. Anyway, as I said, I do not know anything about rules and regs in Canada, but I can be here for moral support should you need it. It's imporatnt to deal with your feelings without the old guilt trip of "but it's so much worse for him, he has the pain" truth is, he does have the pain and the emotional baggage and everything A.S. comes with, but you also have a right to your feelings, they are important & A.S. does affect you too & there are people here that have been and still are exactally where you're at. Feel free to contact me anytime, if you want to PM me, I will give you my email address and we can chat further, or of course I could try to be more faithful about logging on here. It just seems I don't often get the time for myself, but I do get a chance to check email each day, even if it's a stollen moment at work. Glad you joined the KickAS family, hope you get the love and support you need. Take care, God bless & nice meeting you, Sheila

Boy I feel for you....

We have been there....still are there in some areas.

I am the sick one, but I haven't been able to work for 2 years so my husband has had to hold down 2 and 3 jobs at a time.

We have 4 children but our oldest 2 daughters are grown and live on their own, but we still have an 11 and an 8 year old.

The depression, the money struggles, the Drs, the Dr. bills, the meds it all most days seems so consuming..alot of days I dont see how we get thru it, but somehow we do.

Do we have all we want? No..Is Christmas great? Not really but we have each other and my kids dont know the difference.

Will it ever get better? I dont know....all I know is to just keep trying, getting up each day and hoping this day will be a little better.

Dont give up,

Lisa

You aren't alone as you can see from the posts....

My husband was diagnosed with AS, 12 years ago. Up until it reared its ugly head, he was an up and comer management in big box retail. Then the AS hit with a vengeance, and the insurance company went "hey this is a pre-existing condition therefore you don't qualify", the company he worked for demoted him because of the AS, he could barely hold his newborn son, he was depressed, he'd get stuck walking and so on.

We ended up going bankrupt. Our lives changed permanently.

He's now 37, and while yes...he is disabled (as per the doctor), he does use a cane from time to time, and there's moments the stress is maddening, but change turned out ok.

Quite honestly we lucked out. My husband switched to computers and we travelled a bit with the kids. We couldn't try the really good drugs because no insurance company would cover them, so we lived with Vioxx. And in general things were good...and then they took the Vioxx away. Oh boy, it was almost as if he was starting the disease all over again...the Bextra that they put him on barely did anything, and the Celebrex quite frankly assisted him in adding 30 lbs in 10 months and raised his blood pressure immensely while barely even hinting at stopping the inflammation. And then the insanity continued, no work, declared disabled, taken for a "ride" by a business partner, unable to do the majority of jobs as they in some way involved physical bending, no real insurance, two kids, and a wife going crazy.

Then I lucked in on a job, which pays for everything. I modified what I used to do and became something different, and managed to get somewhere. It's reasonable with an insurance company that is willing to take chances. Now we try the Enbrel and it appears to work, but he ends of tearing a trapezius muscle which is spasming bad enough to be as if his back were still on fire.

I guess what Im trying to say is yes...its not fair. Yes, you do have a right to be upset and peeved, and cry, yell, scream at God if you like. And yes, things can and most likely will get worse before they get better. Marriages can be torn apart by something like this...and you may feel sometime that you can't take it any more. Boy is that normal!!!

As long as you and your husband work together, you can have a normal life or as close to one as possible. You may have to change your role in the family, and become the main provider. Your husband will have to change his role, and employment depending on how the AS starts to play out. He may never be able to be employed, he may have to look at something based from home and learn a whole new way of thinking...

It has its ups and downs. But you know, you do end up stronger for it. I look back these 12 years and wonder how I stuck it out...especially in the beginning, how we managed to survive. And we did, and we're stronger for it. Sure we're not millionaires but we're not poverty stricken either.

Just be the stronger one. Watch him and make sure he stays involved and doesnt shrink in on himself. And take some time for yourself when you need to.

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Watch him and make sure he stays involved and doesnt shrink in on himself.

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WOW. i'd move this to the main forum if I knew how just because this is the most accurate description of what I felt the bigest threat AS ever presented to me . I had moments. Big moments that other's might call a decade where I withdrew a tad and shrunk in on myself.

I never heard it described so aptly. I hope no ASKickers ever do this and if they begin to may they have someone as aare as you around to bail them out. I guess I did so here I am laughin' my AS off at the disease today.