I’m getting overly defensive about the coverage I am seeing surrounding the death of Whitney Houston.

“Various prescription bottles were found in her room…”

“The singer was found, along with many prescription drugs…”

“Houston was seen sipping champagne and it has been rumored the singer was taking Xanax, a powerful prescription drug…”

This could be me. While we do not know how Whitney Houston died, it hasn’t stopped the news stations and talk show hosts from speculating she was taking a combination of drugs given to her by a doctor, and possibly alcohol.

Now, I haven’t had more than a few sips of alcohol since my doctors put me on these extremely strong medication, but it doesn’t stop me from thinking about what could have been…or what could be. I realize I am not a cocaine addict, or that I have a drinking problem. And I know Ms. Houston has battled her addiction demons for a very long time.

Perhaps this is all hitting to close to home because I KNOW I can not just quit many of the drugs doctors want me to take. There would be withdrawal symptoms. There would be issues. Quitting cold turkey is not an option. I need these drugs to function. To be able to lift my arm and shampoo my hair, and more importantly I needed these drugs to LIVE.

Let me rephrase that…some of the drugs I need to live, some of the drugs I need to live without pain. But I have no intention of living in pain for the rest of my life. None.

I made a conscious decision long ago that if I had to live with this disease, at the very least I was going to be comfortable doing it. I was not going to suffer and be in pain while my body battled. That means I must take narcotics. Heavy narcotics.

I started off with the usual vicodin, norco, etc. and when those didn’t work well I graduated to the percocets and what not. Then came the xanax to help me fend off the sweats and anger and steroid anxiety and grrrrrr issues that came with high doses of prednisone. And then my doctor suggested I speak with my pain management doctor about methadone.

Yes, I take methadone, and diladid, and percoset and xanax – along with methotrexate and fiorcet and imitrex and plaqunil and plavix and benazepril and lyrica well…the list goes on and on. Granted usually it’s just methadone and xanax and lyrica…But with inflammation up and a colonoscopy this week my doctor added the diliadid to help me through. It’s true, I need so much medication to make me comfortable I get breakthrough pain that needs the big guns they give you in the hospital. Elephant tranquilizers. I’m not kidding.

This means I either can not drive or I have to plan when I take my pills so I can drive and then pop them when I get home (or in the car five minutes from home).

There is no doubt my body is dependent on these drugs in order to not feel pain. But there is also no doubt that when I have gone without them, or when this all started and I had lesser drugs, I was in so much pain I could barely move. Some mornings it is still hard to get out of bed, because I have gone too long without pills. I actually slept all night, and my pain level is so high just rolling over hurts so much I have to rev myself up just to move and get downstairs to take my meds. There was a time I kept them, along with a glass of water, by my bedside. This means when I woke up at 330am with pain, I could just sit up to take the pills and then have an easier time getting up at 7am.

But mind you, even if i get up in time to take my meds it doesn’t end there. I have to sit and wait for my meds to kick in. Usually this means about an hour of reading email with some green tea and looking at the clock, waiting…waiting. There is no rush of relief. There is no sudden ‘aaaaaaaaaaaah’… no. It doesn’t work that way. It’s just every few minutes I can move a bit more. Every few minutes I can breathe a bit deeper, until finally I can get myself off the couch and make lunches and snacks and pack backpacks and make breakfast.

So when I hear that Whitney Houston had a doctor give her what I take, and it might have played a role in her death…yes…yes… my ears perk up and I worry.

She left a child. She left people who love her. She allegedly was found in the bathtub (a place I am told to often go because being weightless in water takes away so much of my pain).

As a disclosure for those who are concerned -when you get to a pain level such as mine, you get yourself a handy dandy ‘Pain Management’ doctor. Mine drug tests me every two weeks to make sure I’m not taking too much, or anything else he has not written the prescription for…he also is the only one who will handle my pain management drugs. He and my Lupus doctor not only talk on the phone but the offices send my lab results back and forth. In other words, my Lupus doctor tells my pain doctor ‘yes, her labs are showing increased inflammation this week’ and when I walk in and say ‘boy I feel like I need more I’m really hurting this week’ the pain doctor knows I am not lying, he has the labs to prove it, and my meds are adjusted accordingly.

But what happens that day where it hurts so bad I take extra, and then happen to take a bath? Will there be talk about how addicted my body was to these pain killers? That the cops found medication all around the house…because they sure would with me. Then again, I don’t have a history of drug abuse so maybe not. All I know is I keep hearing it on the news and it keeps feeling like a kick in my stomach.

The abuse of prescription drugs is skyrocketing in our country. People think because their doctor gave it to them…it must be ok, right? Wrong. There is so much more to it. So, so much more. Just because you needed it for knee-surgery for 5 months ago, and it made you feel good, does not mean you still need it now and I encourage you to seek help.

When the time comes, and my Lupus is finally under control, I will have my doctor help me wean down from all the drugs I am on. Although both doctors shake their heads and are helping me get used to the idea this just might be my life for a long time, I can at least hope I will one day be drug free.

So yes, I worry. I worry that people will see the amount of pills I carry around in my purse and wonder if I’m some sort of doctor-shopping addict, or if I have a legitimate disease that requires all those heavy drugs. I worry that when we start hearing stories of celebrities on ‘prescription drugs’ if it’s some reputable doctor is taking away their pain or over-reaching and doing what they are told because this is a celebrity asking, after all.

I worry my kids will think nothing of taking prescription drugs. They see me do it every single day, multiple times per day. They watch my take my chemo shots when they are feeling up to it, and they watch me count out and take a palm-full of drugs at the dinner table every night.

Of course we have talked to them about the dangerous of drugs- even the ones the doctor gives Mommy. They can see what these drugs have done to me physically and hopefully learn this is no way to live.

Yes, I’ve tried physical therapy and accupncture. We make sure the meds are not in reach of the kids and they all have child-proof tops.And yet here I am, a responsible and in need patient, trapped in an endless cycle of needing the drugs and hurting so very much without the drugs.

Finally, I have to ask you show some compassion for Whitney Houston.  It’s possible she was battling her drug addiction and it’s possible she took too many of the strong drugs you shouldn’t take too many of- a fear I have daily.

…and the next time you hear ‘…found with bottles of prescription drugs by her side…’ you think of those of us who have those bottles on our dressers and hope that when the time comes, we aren’t remembered for what was in those medications, but what was in our heart.

I’m going to die like Elvis.

No really.

That’s how this is all going to go down. So to speak.

I’m finally peeking my head up here on my blog after a week of being ‘sick’ – which is different from my usual ‘sick’ where in I just take all my medications and trudge through life hoping things get better with every lab test. This week we decided to add ‘gastro’ issues where phrases we haven’t used since the kids were in diapers like ‘Aww, she made it through the night without pooping her pants!’ were busted out.

Oh don’t look at me like that, you’ve read this blog before. You are not shocked or surprised I went there.

So I’m now on day EIGHT of said issues and I have another round of IVIG treatment going in me as I type (one-handed). I’m just glad I made it. I’ve been sleeping in the bathroom for over a week so you just never know what state they’ll find me in come morning.

All kidding aside, this is just one more of those things someone with a chronic illness has to deal with. You see, we don’t even get sick like a normal person. Nope. It’s just not that easy. If you have an auto-immune disorder, like I do, you get the same colds and flues as everyone else, but you get nailed.

That is, if what we’re dealing with here is viral. The doctors think it might be. But, that’s another story. (helllllo it started with my increased chemo shot).

But back to my point: as a family with kids you can imagine the germs that go around this house. Which means when someone gets the sniffles, I get pneumonia. When someone gets a 24-hour stomach bug, I get an eight days and counting ‘bug’ that will probably land me in the hospital on bowel rest…I’m just guessing.

To say that I’m frustrated is probably an understatement but I’m trying to keep it in check. We had just gotten word from the doctor that my labs were starting to improve. I was just getting comfortable with the idea of my limitations, and finding ways to work around those limitations. Sure I had been put back on daily steroids, but I had also been given permission to diet. I actually had TWO WEEKS OFF between treatment rounds and was really excited about it…until halfway through I was stricken by what we’ll call the Elvis disease.

The scarier scenario that I am doing my best to ignore – this is my body’s reaction to the increased methotrexate injection and in order to keep my inflammation down I need this dosage.

Hmmmmm, inflammation that gives me strokes, TIAs, kidney issues, liver issues, and potential continued organ loss and horrible, constant pain OR horrible and uncontrollable diarrhea and vomiting.

What to choose…what to choose…tough decisions.

Yup, I think going out like Elvis is my best bet.

He is a legend, after all. And the King.