As you know, my husband had APS. He’s been diagnosed since 2004. It’s been a rocky road and pretty scary at times, but we can’t look back and can only live in the now and hope for the future.

2004 was the year that changed our lives forever. 2005 is the year when we started using that change for good.

In 2005, myself, my husband and our new friend (and fellow APS patient), Tina turned a support forum and informational website into a brand new non-profit dedicated to bringing awareness to APS and education and support to APS patients.

My first priority was to make sure our website and online support forum was informative and honest. I didn’t want another APS patient to be as lost as we were when my husband was diagnosed. I was lucky to find that first forum on Delphi and Tina to point me in the right direction.

I thank God everyday for bringing her into our lives. I wish more people would try to get to know her, because you’d see the wonderful person she is. She’d literally give you the shirt off her back.

I really hope that the APSFA has helped people learn more about APS – the real APS, not the “take coumadin and you’re cured” APS. To me, that’s the most important thing because APS is not a bed of roses. It IS life threatening. Many people die from it, and sometimes they don’t even know they have it before it’s too late.

I have met some of the most amazingly strong people during the past 5 years. I don’t know how people live with being so sick each and everyday. I guess you just get up and do what you can. I don’t know if I could do it. Especially those who don’t have great care and who are basically dismissed by their doctors or even by their friends and families.

Unfortunately, we’ve also lost some people as well – nature of the disease, I guess. It’s hard though because I have so many friends who have this disease and it hit close to home when someone passes. Way too close to home.

I wish patients got better care. I wish they got taken seriously.

Thank you to everyone who has supported the APSFA over the past 5 years. Everything we have done we do for each and every one of you. You are all in my thoughts and prayers on a daily basis. Keep fighting and keep spreading the awareness! Together, we can get the word out!

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The APS Foundation of America, Inc does not make commissions or profits from the Medic Alert. This is being posted purely as a courtesy to you, as an APS patient.

My husband is on Coumadin and needs to have his blood drawn to see what his INR is. Because of his diseases, he should be getting this drawn weekly and then get his result right away and have his medication (Coumadin) dosed accordingly.

He recently switched doctors and hospitals due to a lot of issues with his PCP and the distance he had to drive…just lots of random issues with things at the other hospital. He was on Lovenox (which is a Low Molecular Weight Heparin type drug and is injected twice a day) but he wanted to be back on Coumadin. So his hematologist set him up with INR draws at his office and put him back on the Coumadin.

Everything was going fine.

I wasn’t thrilled with the way his doctor was scheduling his INR draws…2 weeks apart, or a month apart…and he was getting his results at the next visit. I knew this was going on, and I wasn’t happy about it, but my husband didn’t seem to mind too much and I have been trying to let him handle his own medical stuff.

So this went on for a few months…

Then, we get a bill for 110 for office visits for his blood draws. Wait, what? A blood draw is an OFFICE visit? Since when? Seems, since he’s actually seeing the doctor IN his OFFICE, they’ve been billing it as an office visit – resulting in us having to pay a co-pay for said office visits.

Ridiculous. Purely ridiculous.

Ok, so being that I work at our health insurance company, I emailed them and asked if there is something they can do about these blood draws being billed as office visits. They got back with me right away and said that they couldn’t do anything because they were billed AS office visits and not lab draws.

UGH!!!

So i txt the hubbs and tell him there’s nothing the insurance can do, they’re billing wrong and he needs to call the office.

This is where I don’t know exactly how it happened…but I have a feeling that my husband couldn’t get anywhere speaking with the office, or didn’t know how to explain it, or was getting too frustrated to speak (he begins to stutter really bad when he gets too frustrated or worked up)…and I know he was in contact with Tina, President of the APSFA, my partner in crime and our friend…because he calls her when he has to deal with his medical and health stuff…

So not only are his INR draws being done incorrectly (with too much time in between), and he’s not getting his results soon enough…getting his INR a week after it was drawn does NOT help with dosing him!…and they’re also billing us incorrectly? Yeah, not gonna fly. I would have called and bitched, but I was at work…so Tina stepped in as an advocate for the patient from the APSFA.

Tina called and spoke to someone at the desk (a secretary I believe) and gets further than the husband was getting. The secretary didn’t know exactly what was going on, but she did explain and they discussed a few other things. I honestly need to see if HIPAA was breached because Tina said she got further than she should have.

Anyway, I was fuming about it all…so was Tina…so was my husband.

I wish I could have called the doctor while I was mad because I knew if I talked to them after the fact I’d either lose my nerve or be over the entire thing and be out…

And that’s exactly what happened.

When I talked to the office, the woman was very nice and said she’s just a secretary after all. When I talked to the doctor a couple days later, he basically dismissed me and was like…blah blah blah and that’s why.

Ugh. Stupid.

But, what IS going to happen…my husband will be going somewhere else to get his INR draws. Somewhere that can process the WHOLE blood draw and get the INR ON site and not have to “send it out” – which was what was happening at the office. So stupid. So, Monday he’ll go in to his doctor office EARLY, get a script from the doctor and go elsewhere. Hopefully, then he’ll be able to call the office in the afternoon and they will have his INR and dosage for him. If he does this every Monday, then there shouldn’t be an issue…right?

We’ll see.

I am just glad that we have someone like Tina, who is not only a great friend of mine and my husband’s, but also President and co-founder of the APSFA…in our corner. She is always there when we need her for questions or to discuss a doctor’s appointment, or in cases like this where I cannot speak for my husband and he cannot speak for himself.

This is not counting the pain meds my husband is on, or the 1500mg of calcium he takes everyday or the aspirin he takes or even the iron and multivitamin.

There are plenty of people with his disease who have to take more medications than he does, so we are thankful that he’s only on what he’s on and I know it’s what’s keeping him alive and relatively clot-free, but still I didn’t think that I’d be sorting out my husband’s medications at this age.

He keeps forgetting to take his morning shot too…sometimes he forgets both the morning and night ones. Which then leaves him at risk for a clot…which usually shows up in the form of a TIA or mini stroke.

This disease is no joke. People don’t understand and they don’t get that he looks perfectly fine…maybe a little tired, but he’s really sick and it’s life threatening. And it’s also not going away, won’t get better and we don’t know if it’s hereditary.

I’m running out of things to say when people ask why we haven’t or when we’re going to have kids. I want kids. I really do, but I’m so afraid of passing this mess on to a child. What this disease does to babies and little kids is just horrible. I don’t want to risk that.

When I tell people that they look at me like I just landed from Mars. What part of babies having strokes scares the shit out of me don’t people understand? I can only handle one sick person in my life and my husband’s mind and memory are so bad that I don’t think I could even trust him to care for a child alone.

I haven’t put the idea out of my head completely. But right this moment, this is where we stand on the issue. I wish people understood my fears and the risks and would just mind their own business about it. We may change our minds later down the line. We still have some time. Who knows what the future holds.

So today I spent 66.00 at CVS and then spent 45 minutes getting the pills and shots ready for the week. Hopefully the new system will help him remember his shots. If nothing else, I will keep track of them myself and know exactly how many he’s doing in a week.

And maybe, just maybe, now that he’s back on all of his meds…he’ll start feeling a little better.