Groggy and out of it, I sat up in my bed and could hear my husband reminding the kids they could call his number at any time tomorrow.

If you need me, remember how to use the phone, right? If Mom talks like that again, just call.

And it was then I realized I had fallen asleep, in bed with the kids while they watched tv, and I must have talked in my sleep and scared them enough to have them run to get their Dad.

So I jumped out of bed to find out what I said and how scared they were. If I scared my kids I need to go hug them and tell them it was ok. To go comfort them. To tell my husband I was fine, I just dozed off. I had a long day of treatment and then taking care of the kids after treatment…all I did was doze off while we watched tv at 845pm. How horrible could it have been, I just dozed off for 20 minutes????

Before I could even get a foot on the ground, Aaron was in the room trying to get me to lay back down.

Go to sleep. Just get lay back down. 

But the kids

The kids are fine, just go back to bed

No, I need to see the kids

I just feel asleep, what did I say???

As it turns out, I apparently told the kids to have their father put the penguins away before bed. Or something like that. Scared, my oldest went to get Aaron who came upstairs and put them in bed.

Despite my husband’s urging to just lay down I went to see the kids. Hugged them both. Told them not to be afraid. We all talk in our sleep sometimes. I had just been sleep talking. I’m so sorry it scared them.

It was bedtime, we were in our pjs, in bed, watching tv, and I dozed off. That’s all. It was nothing to be afraid of. They hugged me and hugged me and wanted me to lay with them. But I knew if I laid down I’d fall back asleep and risk talking again, and I needed to go let out the tears welling up inside me that needed to burst out. I was having a hard enough time keeping them from exploding all over their stuffed animals and fuzzy blankets.

Holding it in I went back to my room and realized I needed to take medication, which means I needed water, which means I needed to face Aaron who I also didn’t want to cry in front of. He didn’t need it. His shoulders have enough on them, they don’t also need to be soaked with tears and snot.

So I held my breath and got what I needed downstairs and came upstairs again to find myself too emotionally exhausted to even cry.

I can’t be awake without scaring everyone.

I can’t be asleep without scaring everyone.

And what is worse(?)…I feel better, physically. But that doesn’t seem to matter. Labs are improving. My body is improving. But it DOESN’T SEEM TO MATTER.

My kids and my husband are what keeps me going. To cause them any worry or pain or to scare them… destroys me.

My health had spiraled downward in the past few months, and needless to say we’ve been a bit scared around here. It has been a humiliating round of trauma for me, personally, as I attempt to pull myself up from new lows.

No, really…new lows.

Think I’m kidding? It started a few months ago with uncontrollable diarrhea. Emphasis on uncontrollable. Cue colonoscopy where I had the fun of getting knocked out fully (thank you) and we await biopsy results that still have us on edge.

Then there is the increased prednisone. That equals increased weight gain to new highs! Or lows, depending on how you see it. I now have two chins. And folds where I didn’t realize people could have folds. I can’t lay down anymore without new weight shifting and falling, very uncomfortably, into me. I’ve taken to sleeping while pushing my boobs down towards my stomach, trying to be comfy. I’ve also started putting deodorant under my huge boobs.

Don’t say I never give you the really good tidbits. Honestly, more people should talk about this. Prednisone weight gain isn’t normal. So it isn’t proportional. Which means I can’t possibly be comfortable, because that would be too much to ask…no, I’m freaking miserable with a very disproportional weight gain that just seems to hang on me like 40lbs of weight pulling me down in all directions.

Once we weathered the colon fun, I suffered an episode that had me in the hospital. I’ve already talked about it briefly but we did just get word from the neurologist that everything is ok. I’m thankful, if not still a bit freaked out and wishing there was a nurse around me at all times.

Then the kids got Influenza A…and despite my having the shot, guess who got it next? I type to you from bed, where it remains hard to lift my head…I’m not kidding. In fact I have to keep taking breaks between sentences because it’s hard to hold my arms up to type. My muscles hurt that much. With pain reliever.

They tell you all these things will happen with Lupus but they don’t really explain what it means for you, for those around you, for those taking care of you. It’s hard. Beyond hard. I have horrible guilt…I’m working on it. I have horrible regret…I’m working on it. I have concern for my overall health…I’m working on it. Doctors have said ‘we need to make you sicker to make you better’ which makes me horribly angry, because I don’t feel like I can get any ‘sicker.’ My family can not take me getting any sicker.

I say that but they keep taking it…and I keep getting sicker. Scaring me. It’s very scary when you think you can’t take anymore and it just keeps coming…harder.

My body needs relief, badly. I’m begging my doctor for relief today, and am begging the universe for a break. We’ve taken more than we can handle, and while reinforcements come soon, it’s not soon enough. My brother doesn’t need to be changing my sheets and trying to carry me into an ER all in a span of a few weeks. My husband deserves to train for his race. The kids deserve a Mom that can be present mind, body, and soul…not in bed hoping to lift her head off the pillow.

I don’t think that is too much to ask.

Frustration doesn’t really even begin to describe how I feel right now.

I’m somewhere between wanting to train for a marathon and give up to just not be in pain anymore.

Don’t read into that. It doesn’t mean anything more than it says. Pain sucks.

I’m beyond unhappy with my body and beyond unhappy with having been back in the hospital and going through another round of treatment and having the flu in the house and Republicans all up in my vagina.

I feel like I’m a burden …again. I feel like I am no good to anyone around here and their lives suck because of me and all the things I can’t give them or can’t do.

I look like some 200lbs version of myself that I hate more than I hate … I don’t know… more than I hate the Colorado Avalanche.

That’s a lot of hate.

But that is the honest truth of life with Lupus. And tomorrow I may wake up feeling fine and the kids better and I will smile and be thankful for a great day with my family. It’s that simple and that complex.

I want to blog more, and write and push all my words onto the page but I don’t want to scare anyone. I want to sleep and rest more, and gain strength and get healthy and mount the biggest comeback the world has ever seen.

But more than anything, I just want to be. Making those around me happy and content. Making those around me unafraid and without worry.

I want to be able to take care of my family- simple things like making lunches and driving back and forth to school. Cooking dinner. Doing the dishes. Daily activities, as the doctor calls them.

I don’t think that is too much to ask.

So that is where I plan to concentrate my efforts and my energy: those around me. They need it. I need it. We all need it- with some space to breath and grow.

The good news is all of my current medical issues appear to be medication related. The bad news is all of my current medical issues appear to be medication related. This balancing act continues. But I have no doubt we’ll get to a place where it feels like home.

That is all I ask for. It is all I want. And I will get what I want.

Today was the day I thought I was going to lose everyone I love…or, actually, they were going to lose me.

I’m still not sure what happened. One minute I was packing backpacks and getting kids out the door, the next I was asking my brother to drive because I could feel something wasn’t exactly ‘right.’

Dismissing it from my head and telling myself i was just being safe, we got in the car and headed to school. My brother driving, the kids chattering away in the back seats, and I on the passenger side slightly annoyed I asked my brother to drive because I should have just taken the car and run errands instead.

Then I got woozy. Really woozy. 

I was glad he was driving, but I still wasn’t sure something was wrong. So along the freeway we went, all the while with me slumping further in my seat. The voices in the car feeling like they were getting further away.

Then I got dizzy, and I tried to shake it off telling myself maybe I was hot – as I tend to get sometimes if I don’t take enough of my bioestrogen cream (I lost my uterus to Lupus) or xanax or… the weather. Who knows.

We drove along and things in my body got worse. I could feel the tips of my left fingers begin to tingle (was I getting a bad migraine? that happens a lot with my migraines).

But then something new happened…it felt like there was a brick on my heart. Not like I needed a Tums, but like I needed a crane lift to get it off. It hurt. And I wanted to tell my brother but I didn’t want to scare the kids and I couldn’t get the words out even if I decided to scare the kids.

So as calmly as possible, and without looking at him, I told him something was wrong. I’m not sure it came out as English. As calmly as possible I told him I was telling Aaron to turn around. I told him to get the kids to class. I told him to take me to the hospital.

At least, in my mind I was telling him to do all these things. I have no idea how much of it came out of my mouth and made sense to him.

I saw the kids walk into school. I saw my brother walk them in and them out of school. I remember thinking ‘they didn’t get walked all the way into class’  and the rest is a blurr.

I remember my brother trying to get me out of the car, but my body wasn’t working. I remember crying, trying to tell the doctors what was wrong, I remember a doctor telling me I was taking xanax and I must have horrible anxiety. I was trying to explain I was on xanax because I was on steroids, but he kept saying this was probably my anxiety.

All I could think was ‘anxiety? anxiety means you can’t lift your left arm or speak clearly?’ and I wanted to make a fist with my weak left arm and punch the doctor. I really did. I’ve met some really jerky doctors in my life, and I’ve had them tell me some pretty stupid things…but this doctor was NOT listening to me. I wasn’t taking anti-anxiety medication because I had horrible anxiety issues, I was taking them because I was was on PREDNISONE which made me agitated. Steroids do that. He was a doctor, he knew this, right?

Then things got worse. A nurse was looking in my face trying to calm me down, I could feel my mind going in and out of being awake, and I could hear my brother and husband crying.

I thought I was going to die.

And if I wasn’t going to die, I was convinced if I fell asleep, I was not going to wake up for a very long time. So I was fighting it. I was popping my eyes open as hard as I could and the nurse kept telling me to focus on her. I didn’t want to focus, I wanted to get up and punch Mr. Anxiety Doctor. With my left hand that wasn’t working.

All I could do was think about the kids…how someone would have to pick them up and tell them I was asleep. I didn’t want to let go of what I thought was my husband’s hand, but it turns out it was the nurse. I think.

I also kept wondering why no one would get this brick off my chest. No one seemed to care because the test showed no brick. But I could feel the brick.

In comes Mr. Anxiety Doctor who says, very casually, ‘wow, you are on a lot of medication, it might be the medication’ … no kidding asshole. Have you heard a WORD any of us have told you?

Ok so maybe my words came out as ‘ladglahdgahdfakdhgakd’ but I know my husband and brother were making sense.

I also know I was petrified this was the last time I was going to be able to talk to anyone I love, and I couldn’t talk. I was screaming in my head, but nothing was coming out. I’m not sure I can explain a more frustrating feeling, especially when all you want to say is ‘I love you.’

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.