Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Well...I'm Starting To lose Hope

Hey Girl,

Well the 4th..lot's going on all around we live right by Rhema so I could hear everything going on...lol

The boys we have been taking care of their neighbors bought a fireworks permit and they live in a culd a sac (sp?) so Bill and our kids and them went over there to shoot all of their fireworks...I of course stayed in bed drifting in and out of it until I would hear a big boom and think someone was breaking into the house..lol

Yes, I am hoping to talk to someone this week and see if there could be any options, help ect...

I know the family has to get tired of the old sick broad in bed all the time, I know they love me but it still gets old, it gets old for me..lol

Yes call me a glutton for punishment, seems we always have someones kids or are caring for someones kids why they are gone somewhere, kids have always been my passion...have been thru alot of kids that didn't have a good home life and they have come back and said you know when you let me spend the night, or took me to the movies or we all sat down and played games that meant alot to me as a child when I wasn't getting it from anywhere else..kids deserve a childhood, the real world will get to them soon enough.

How is your ankle doing?

Doing a little better, took a swim in the pool with Bill for the first time in a couple of weeks, it felt soooo good.

Hugs,

Lisa

Lisa, dear one, just remember no one person's struggles are less significant than another's here and yours are just as tough as mine. I've found it is so hard on us when we call, then are told we will get a call back, but they don't and the cycle just keeps going. The frustration sometimes is overwhelming. We reach out for help, they tell us they will help, then inevitably they drop the ball. You need this, please don't let them drop the ball this time.

Cindy

Lisa,
We're praying that this difficulty with Remicade is resolved soon and thinking of you so much. Hang on Sis and hopefully this won't be a problem for long.
Love and hugs,
Russell

You sound a bit more chipper today.....Hope you get some good news from someone on the remicade.

Ankle is feeling better...it's nearly 4 weeks since injury. Once I can totally stop limping, maybe the opposite hip won't be hurting so much. Way busy at work this week....moving some instruments around...the start of a remodeling binge. Nothing is where it usually is, so you see chemistry people wandering around the department area: "where are the gloves? where is that cabinet that used to be over by STAT lab area?" It's going to be a long summer.

You will reap good karma by loving a bunch of extra kids. It's always good when they come back years later and tell you that they both remember it and appreciate it!

Hang in there!

Remember, when you are feeling better, LUNCH!

Lisa,
I hope that you are better today?
A new family has a little 4 year old that now call us:
grandma Lin and grandma Lon... it si kind of cool..

So sorry about the situation you're in. Truthfully, the reason that I'm not willing to try any expensive meds myself is because our insurance runs out December 31st of this year. It sounds like you have a strong connection with God, and if that's true you know He has things handled... you just are not privy to His plans I HATE THAT PART! Our insurance system is really sad. Two of our kids are married to Norwegians and live in Norway. They pay the same taxes as we do here in the states, and somehow they manage to cover every single citizen with full health care and dental/vision until age 18. And they live longer than us! Ok, that's enough of my rant. I will pray for you. Here's a hug.

Aw Lisa, this doesn't seem fair at all.

4 months is a huge delay, especially since it doesn't sound like you even see a light at the end of this long tunnel to even know whether or not you'll be able to access Remicade treatments again. I am with Wendy in being completely baffled by your system. It seems so confusing and appears to place the burden of figuring out all of the red tape or possible mechanisms for access on top of the patient who is too ill to manage it.

Since you have an immunologist prescribing yours, is it possible that they just might not be as familiar with all the ins and outs and tricks that a rheumatologist's office might know better how to help with? Unless they are already prescribing it as often as other specialists, maybe they could call another office to see if there exists a way to get around these hurdles. Sorry if this idea is nonsense but I just WISH so much that somehow there has to be a way for you to access this treatment that has been the only thing to help you! It just kills me to think of you having to go without. Maybe call the Remicade people directly? Up here, I have a Remicade 'facilitator' who helps to look after the approval process for govn. access. It is in their interest to help because otherwise they lose the sales.

You are NOT a burden to anyone! Just look at how much you contribute to so many here on KA Lisa... there is no doubt in my mind that even if you can't get up to do dishes or whatever, you are the emotional, spiritual, guide and glue that contributes more than you probably realise to the benefit of every single one in your whole family.

I know what you mean by wondering which is worse, having the benefit of this and then having it pulled out from under you and having to go back to how it was, or to not have known the period of relief... but you don't have to look at dealing with the next 20 years... just get through this day and this week... somehow, just trust that there are going to be better days ahead for you again!

Hugs for strength and endurance!
mig

Hello Lisa
Goodness it really sounds like you have your hands full (with your friends kids) at the wrong time. It's a lot to deal with having your own (not inconsiderable) brood with the addition of someone else's little one's - let alone when you are at a low ebb. No wonder you are feeling so low, sweetie.
Sending you a huge hug and hope you feel much better soon

When you feel there's no hope, just look at your kids and up and coming grand kids. Hey, your responsible for them even being here. Even as bad as you feel, your neighbors trust you enought to en-trust the care of their children with you. Thats saying something about you.
You have oodles of folks here who will help you.

Lisa, I haven't read all of the replies. I am so sorry for your situation. If you remember, I was on Remicade for a year and Healthwell Foundation picked up everything my insurance didn't. Have you checked with them? You can even apply by phone or online.

Sorry I haven't talked to you lately. My Lupus and RA have been the worst in a long time. They put me on Arava and it made me so sick. I stopped it and am feeling better finally. Hubby said either I stopped it or he flushed it. Either way I was through with it. Had to miss all of the 4th fun. I thought of the time you were here. Good memories while I was sitting here bummed.

I have been really bummed myself. Got to go to our daughter's tonight and out of the house for the first time in 10 days. The grandson from FL came in today. His Mom will be here Tues for our 50th celebration. Pretty amazing when I am not even that old. Mom married me off while in the womb.

Hope the family is ok. Our family is struggling. My brother-in-law is really sick fighting inoperable Pancreatic Cancer. They can't even get chemo started because his liver enzymes are so high. He is losing a pound a day. He just got sick posssibly 6 weeks ago thinking it was his gall bladder. Need your prayers please and at church. I will email you.

I hope the Remicade helps you. I hung in for a long time and I got much sicker. I seem to get so sick on these meds. I think he one more in mind since this one didn't work. I don't even know whether to try it or not.

Hugs and Blessings.
Possi