One of these things is not like the other....

Things in the house have been very crazy.  Both boys are sick.  As am I.  Last night, the little one was having horrible growing pains and so I was rubbing his legs.  I kid you not when I say I stood by the side of my bed for an hour, just massaging his little knees and calves.  I stepped out of just a minute.  When I came back to the room, not only was he crying, but my husband was standing in the bathroom covered head to toe in hives.  Huge welts, everywhere.

So I walked out and went straight to the medicine cabinet.  I realized it was also time for Ants and my meds too.  I filled the little cups and got the kid all medicated.  Filled a little cup of Benadryl for David.  Then it was my turn.  I started pouring my cups then realized it looked funny right before I threw it down the hatch.  What was it you ask???  In the middle of all the craziness, I grabbed the wrong bottle.  Yes it had my name on it, and it was the little small bottle, BUT...

What I needed was cough medicine.  What I almost took...laxatives!!!  

Luckily I caught that before I took it.  Lord knows the last thing I needed was to have to lock myself away in the bathroom while the rest of the family fell apart.  

Today was better.  Anthony is feeling better.  Alex spent the day with his Grandma.  David is still a little under the weather and his hives came back again tonight, but no where near as bad.  We will wait and go to the clinic instead of the ER.  And my chest is clearing up.  I sound like a 30 year smoker but it could be worse!  The day was spent resting and reading, but I guess that's what weekends are for right?

**Just a friendly reminder to always read your medication labels.  Make sure they are the right ones as well as the side effects so you know what to expect!!**

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Now Reading: Despite Lupus

 I recently started a new book and its nothing like I have ever read before.  I first heard of the book though the 12-12-12 project my girl Marissa started.  The author Sara Gorman, was featured in May.  Her condition: Systemic Lupus.  I had heard of lupus before.  Back in 2004, one of my Drs had though that I might have it.  I don't.   But when Marissa suggested it, I wondered how it could relate to me?  After all, I don't have lupus.  The tagline of the book:  How to live well with a chronic illness.  Now that I can relate to.  That I need to figure out!  After months of putting it off, guess what popped up at the library for me.  This book!

Ive only gotten through the first so many pages and have written down so many quotes and started to write down my "list".  That is another post on its own.  I may not have be on the same team as her, but the rules are the same.  Its not, sick or not sick.  I'm allowed good days and bad.  I've always known that the things I do today will determine my tomorrow.  But somehow seeing and reading about someone else struggling and still coming out on top gives me such hope.  I didn't realize how much hope I have lost over this hopeless summer.  But I'm on my way back up.  Thank You Sara and Marissa for helping me find my way again.  

Oh! Remember this post about my super cool Pillfold.  Guess who is the brains behind them?  The very same Sara Gorman that wrote this book!  

Stop by Abledis and catch up with Marissa and the 12-12-12 Project  HERE.

And don't forget to visit Sara HERE to learn more about her book and pillfolds!!

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Got Pills? Get a Pillfold!

For those of us who are dealing with chronic illnesses and other health problems one of our many worries are our medications.  Tell me something.  Where do you keep your meds?  In a cabinet?  Maybe a pillbox?  That is what I had.  It is a weekly one.  Sectioned off for morning and nights.  Its a pink and blue thing that's just not very cute.  And why does that matter?  Because every day when I would open it up it was sort of depressing.  And Im a girl, I like cute things.

I first heard of Sara when she was featured as Mrs May of the 12-12-12 project my friend Marissa is doing over at Abledis.  Then when I saw this post I was in love!  It was the first thing on next on my Christmas list too!  Then Marissa, being awesome, mentioned on one of her posts that  the first person to mention the name of Sara's book Despite Lupus, she would buy that person one.  I was all over that :)

And look what I got in the mail!

Thank You Sara and Marissa!  I love my new pillfold :)

And I love the print!

Inside.  Each day has its own pocket.  Sun and moon for day and night :)

So if you are looking for something cuter than the old pill box to keep your trusted meds in, check out Saras website and get one for yourself.  She also has pill bags which are just as awesome.  Might have to get me one of them too.

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A confession gone wrong

Confession time. I cant count. Nor do I know the difference between March and May. Both months have very significant days in them. For the last month I have been anxiously counting to my one year mark on the transplant list next month. Yeah, about that, its not until May. And 3 months away. So good news is, I have only been listed for 9 months. Bad news is...Ive only been listed for 9 months. UGH! This my friends is what happens when you don't take your meds like you should.

I really have been slacking on my Kristalose. I am supposed to take it every morning. Every Day!! No if, ands or buts. BUT, some days I just cant. And I guess I'm just going to have to do it later in the day if not in the morning. Because I can feel the clouds rolling in. And by clouds, I mean the damn storm that is encephalopathy. My mind gets foggy. You know that feeling when you have been drinking to much and you are telling yourself you need to focus and stop acting a fool. That's what it feels like. I know what I need to do, but its just so hard to focus. And some days I just cant take it. Last week the boys were both sick. So I most definitely could not take it while they were home, because they needed my full attention and I could not be spending my whole day in the bathroom. I had planned on taking it in the afternoon, but trying to cook and having to run up the stairs to go, leaving the boys downstairs, not an option either. So I figured Id take it at night after everyone was sleeping. But then I spend the only few hours I had to sleep in the bathroom.

Who would have though mixing a packet of powder with some water, and chasing it with another bottle of water could be so hard. It is much easier to swallow than that dreaded Lactulose.  And for those of you who have never had to take it are probably calling me all sorts of names. And those that have taken it, may or may not understand. These meds are draining. No pun intended. I know I have to take them, and I usually am very good at taking them, but then weeks like the last happen and days like today happen. My mind is wandering. Its nothing to serious for now, but if I were to eat a bunch of red meat, Id probably have another episode like THIS. The good thing is, I know my body. I know the signs. And if I have to take them, I will. Just some days, I just cant.

So what exactly are these meds and why do I need them? Keep in mind, I am no Dr, but this is how it was explained to me. We all know that the liver is like a big filter. My liver is damaged. Therefore, it isn't filtering the toxins out of my blood. The toxins are then carried to my brain causing the H.E. This causes me to be confused and forgetful. I have horrible bouts of insomnia. I can get to the point where I slur and stutter and I just cant get the words out of my mouth. My Anxiety goes though the roof. My body gets so tired. And the treatment for all this...Lactulose/Kristalose. The main purpose of this is to prevent the liver from absorbing all the bad stuff. And getting it out of my body. The only way out...well yeah. So pretty much its a super laxative. Every have food poisoning. Its like that, except on purpose and every day. So when you add dehydration to the already horrible list of the symptoms of the Encephalopathy, you can see why, I say its physically and mentally draining. Ive recently switched from Lactulose to Kristalose. Mostly because the side effects were so horrible and painful. It seems to be working. It much easier on me and my insides than the Lactulose.

Have any of you taken this? Or knows anyone who has? I wouldn't wish it on anyone.

Until Next time...Bottoms up.



I do NOT miss this morning shot of nastiness :)

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Paperwork, Deadlines & Meetings OH MY

It seems I hardly ever turn on the computer anymore. I guess I could blog from my phone, considering I do everything else from it anyways. What ever did we do before before smart phones? Anyways things have been the usual crazy around here.

Friday we had our pre-hearing meeting with our lawyer. Pretty much we went over who would be in the room, what to wear. We also went though my medical reports from all my Doctors and went over my medications, symptoms and reasons for not being able to work. Dr O, my transplant Doctor clearly stated that he feels I am 100% disabled because of the Hepatic Encephalopathy. I had heard him say it. And I know it is true, but to hear someone say I am not to be relied upon, kinda hurt my feelings. I mean its good because it will help my case, I hope, but no one wants to be called unreliable. I know it doesn't mean that I'm completely useless, but as far as working, I just cant right now. I hate that I'm put in the position to need help, and I hate asking for help, but the truth is, without it, I don't know what I am going to do. My hearing isn't until the 25th of June and I'm praying it doesn't take that long to come back with a decision. My social worker suggested I write out my medications and the way they affect me on a daily basis. And they point out how that would prevent me from working. I'm going to be doing that this week too.

I also got word back from Food stamps. Another thing I thought I would never have to ask for. We have gotten so far off of the road we planned to travel. Anyways, seeing as all our money goes towards bill and more bills, we decided to see if we would be approved for food stamps. At first I couldn't believe I was even thinking about it. I wanted to make sure that I wasn't taking away from anyone else who needs it more than I do. But now I just tell myself that we need this just as much as others. I am over the gasps of people who cant believe we applied. Unless you want to buy my groceries, feel free to keep your comments to yourself. Thank You! So we faxed in the paperwork today, I called and double checked that they got it. And now we wait, yes more waiting, and hopefully we get approved. For how much? No clue. But at this point any money I don't have to spend on food is money I can spend on medication. I had to get over my pride and ask for the help. If you need it, ask for it! That's what its there for right?!

I have also been going though my medical bills and taking a real close look at them. I suggest you do this when you get the bill. I found 2 bills in which the insurance didn't pay their part. I had to call and ask why. Thankfully they were great about it and are going to be paying it. That really helps. I also noticed the price difference between scopes done at the hospital and at the endoscopy center. The last one I had done, I chose to do it at the hospital because it was closer and my inlaws could drive me. My first one was done at the Endo Center. The hospital bills are so much higher. More than what we would have lost it David had taken the day off. Shoot the bills were more than he makes in a week, and that was just the hospital portion. Still waiting on a bill from the Anesthesiologist and Dr H. The thought of not being able to pay my hospital bills eats at me. I hate it, but what can I do. Maybe they have a buy 2 get one free special next time I go in?!? Ill be sure to ask!

The other thing I have been doing is checking the price difference between ordering my medication at CVS and online though my insurance. We have a Caremark plan though our insurance to pay for medication. And the amount I save if I go through them is amazing. I don't know why I didn't do it before. Plus I get 90 day supply instead of only a 30! So there is just another thing you might want to check!

I hope you are all had a great weekend. Sending spoons to my spoonies and hugs to you all!

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Make a call & save some money

Wow, lack of sleep must have really gotten to me yesterday. For a second there I forgot I even posted anything. But that my friends is the toxins kicking in. Looks like encephalopathy is setting in. Its OK though because I took my meds today;)
And we are doing everything we can to keep it under control.

Take my new medication for example. Anyone ever heard of or been on Xifaxan? Well when my Dr told me it could be expensive, he was NOT kidding around. The original price was almost a $1000. But with our insurance that knocked it down to a $360 and change. Now while most people might cringe at that price, I am no stranger to ridiculously priced medication. When I was pregnant I had to take Lovenonx injections, twice a day and that was $80 a week. Luckily Ive had a nice break. My coumadin and other meds I am currently on are all$10 a bottle. The Prevpac I was on the last two weeks was only $100. Thank God I'm about done with that. And now I get his with this.

Anyways, what I really wanted to say, I am still trying to find a way to come up with the money for these medications. The case manager at my lawyers office suggested I call the manufacture of the drug and see if they have any rebates or coupons, so I did. And guess what, I am being mailed 3 $75 rebates as I type:) So just a quick tip if you need some help. Call and ask. The worst they can say is no. They might beable to point you in the direction of someone who could help though.

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