Thursday, September 29, 2011

Hands at 10 and 2

There's always something new around the corner.

Today I took my daughter to get her hair cut - she decided to go from a really long style to a short angled bob.  She looks really cute and definitely older.  One of the things that always impresses me with her, is that she will grow her out really really long, just so she can cut it and donate it.  She takes her hair and sends it to Locks of Love - so that another little girl could have long beautiful hair too.  I love that heart of hers and her desire to want to ensure that others who are not afforded everything that she has (due to an illness or a disorder) that they have those little things which help make them feel like any other little girl.  Cause guess what, in her eyes they are.

This morning we enjoyed beautiful sunshine and I should have savoured it just a little bit more than what I did.  Cause as quickly as the sunshine was here, it has now been replaced with thunder, lightning, wind and heavy rain.  So now I am here in a dark gloomy room - but I am completely relaxed and fine with the ambiance right now.  It's that perfect napping kind of weather - which I have been fighting all day not to do - but I think the weather is trying to tell me I should.  I love the sound of the rain hitting the windows.  There is actually a lot of stuff flying around outside right now...kind of interesting.  And let's add some hail to that as well.  Fun.

Something new.  And that's how life is.  You try something new.  You experience something new.  You meet somebody new.  You could be in the midst of one thing and all of sudden everything changes and you are in something new.

I am hoping for something new around the corner.  Starting tomorrow my TPN bags will change - only twice a week will my bag contain lipids.  The decrease in lipids should help with some of my symptoms or at least lessen them.  Next week I have my appointment with my rheumatologist and the week after that my appointment with my gastroenterologist.  So we shall see - these next two weeks could go either way.  In the meantime, my hands are on the wheel, seat belt is buckled and I'm driving the speed limit.

Here's to hoping for positive outcomes.

Tuesday, September 27, 2011

I'm my own lawmaker...

Another day of being an active decision maker in my medical care - even if those decisions do seem small.

I had my visit with my home nurse - still the substitute one for Tess.  I talked to her about changing the way she did my picc line covering, because within the first day after the last one it was starting to lift up.  Having my bandaging lifting up is not a good thing.  There's a hole in my arm that is trying to close up but can't because it has a tube in it.  That leaves open the possibility of infections - which I definitely do not need.  So I suggested that she apply the bandaging the way Tess did, as I had not had this problem previously.  We'll see how this next week goes.  It may seem like a small input - but if it keeps me from getting an infection - then it is a huge input.

Today is also the day that I have to weigh myself.  I have to provide my weight each week to not only the nurse but also the dietitian.  The dietitian uses the information to determine if she needs to make any changes in the portions of the ingredients being included in each of my TPN bags - especially the lipids (fat).  Well, I got on the scale and saw that I have gained 3 pounds in the past two weeks.  At this point I do not need to gain weight.  I am actually considered overweight for my height - but I was satisfied with my hospital weight because I know it is a good thing for me to be level at a little bit of a higher weight, so that my body has fat to feed on.  But I don't need to gain any.  So I called the dietitian and suggested that we change the amount of lipids being added to my TPN bags.  If you have seen me (or actually my bag) - the lipids are what make the liquid white vs. clear.

Well, the dietitian called me back and said she agreed.  That what she is going to suggest to my doctor is that I receive each week 2 TPN bags that contain lipids and 5 TPN bags that do not.  They do not want to completely eliminate my lipids, because I am not able to consume enough food to give me a healthy dosage of lipids.  I need the fats for things like keeping my skin from cracking, hair not falling out, etc.  So the dietitian talks to the pharmacist and then pharmacist in return writes an order which gets sent to my doctor for approval.  I am hoping he approves it, because I really do not want to be stressed out over continuing to gain weight and needing to buy new clothes.  On the days that my bag does not contain the lipids, my calorie count will be lower - so I need to try to consume at least 100 calories through something I eat.  That shouldn't be too bad - or at least I hope it's not.

So two steps.  In the grand scheme of life - they are small ones - but I am being pro-active in my care and making sure that my concerns are heard.  Thus far I have not received any resistance, which makes me happy knowing that I have a medical team who listens and has my care as a priority.  That they appreciate that I am an educated patient and that I know how my body works.  I have not always been this lucky - unfortunately.  So I am thankful for the team that I have, that I don't have to feel stress knowing that I am battling against my healthcare professionals.  And if for some reason that should change in the future...I will be laying down the law.

But it's a great feeling to feel like I am in control of something - when I have no control over how this disorder is going to affect me.  So while I still have all my usual symptoms - today was a win for me mentally.

Monday, September 26, 2011

Ease your heart and mind...

Mentally drained.

Ended up staying home today because my daughter was sick and needed to stay home from school - and unfortunately the husband and son are out of state on a fishing trip.  I really needed to get back into the office today but I had to do what I had to do.

So she rested and I worked.  But later in the afternoon we had a pretty intense conversation.  We were discussing something else and the conversation transitioned to the amount of stress she feels like she is under.  So we started to talk about it.

It came as no surprise that the majority of her stress was more worry - worry for me.  Worried about what happens if I have to go into the hospital again.  Worried that there is no cure.  Worried about what they would have to do if I didn't have my TPN line any longer.  Just worried.

It was a hard conversation to have - especially when she is old enough and smart enough to realize if I am lying and could very easily go on the computer and look everything up.  So I was honest with her.

I told her that yes there is a possibility at some point in the future I might have to go in the hospital again.

Told her it was most likely my own fault that my last hospital visit was for 9 days - because I waited to long to go to the doctor.  That if there is a next time, I won't be doing that again.

Told her that for right now, I'm fine.  This was one was kinda sorta a lie - but I'm not in the hospital so I am fine.

I told her that yes there is no cure today.  But who knows what the future holds.  Someone may not find a cure for a while, but maybe someone will find another treatment option.

I told her that I don't know what my future with Gastroparesis is, therefore if I spend every moment consumed with the what ifs then it will weaken my mind and ultimately my body.  I told her instead I try every day to live my 'normal' life and asked her to do the same.

I told her that not every patient experiences the same symptoms or outcomes - so there is no way for me to know what lies ahead for me.  Instead I need to focus on today.

It was an emotional conversation.  Afterwards she went in her room for a bit - maybe ten minutes.  The rest of the night has been great.  It's as if a burden has been lifted off of her shoulders.  I explained to her - just like I have been telling everyone else - if she has questions or is starting to stress about something, especially related to my health, that she needs to come talk to me.  Don't let it build up.

I wish I had more answers for her.
I wish I had more answers for me.
But I don't.

It's taking each day for what it is - some days are ok and others not so much.  The days where it is not so much, the best I can do is hope tomorrow is better.

Here's to hoping that tomorrow is better.

Sunday, September 25, 2011

I'm gonna pay...I'm gonna pay

This morning started much earlier than I had wanted it to - but when someone in my house gets up, I'm up.  My boys are heading up north for a few days to do some salmon fishing and they left at the butt crack of dawn.

Butt crack of dawn - what the hell is that supposed to mean?  I hear it all the time, but it just doesn't make any sense to me.  But I digress.

So I made the decision to start my TPN while I was up - which meant I was able to disconnect around 3pm. Which made me very happy!  I didn't accomplish anything else though today - besides resting.  I had thoughts in my head last night that I would dry out some peppers - maybe make some cake pops with my daughter - go pick up food for the chickens - do some laundry - clean the house...nothing.  This morning instead I decided to go back to sleep and then just stay snuggled up on the couch watching random movies and tv shows.

I was kinda hungry and figured I would eat some rice - but I didn't feel like cooking it.  So instead I ordered some chinese food for my daughter and me some rice.  Well my rice turned into - let me have one of those scallion pancakes (which I LOVE) and hey while I am at it let me have a little bit of those chinese vegetables and let me eat one of those fried noodles with some duck sauce on it.

I don't know what the hell I was thinking.  My stomach has already blown up and the pain is already starting.  Actually, I know what I was thinking.  I want to eat some normal food, damn it.  I am tired of not being able to eat what I want.  It was definitely one of those moments of - I'll take what comes my way - I want to enjoy this for the few minutes I will have.

So my daughter just came out and asked if I wanted my fortune what did I say?  Yes of course.

My fortune : The respect and help of influential people will soon be yours.

I will take that as getting gastroparesis some more awareness and who knows - maybe a cure or at least another treatment option.

Friday, September 23, 2011

Just talking shit...


I never realized all of the information which exists about poop on the internet.  All the different terms that people use, what different textures or colors mean, etc.

Now I am not trying to be gross or anything - so I will not take offense if you have already hit the Next Blog button or if you have closed your web browser all together.  I consider myself a pretty educated person - but I was way off on this one.  Just figured everything was based upon the foods you were consuming and whether your GI system was happy with it or not.  To some extent - some of that holds true.

However, there are certain symptoms which are clues or markers that something more serious is going on.  Things which we really need to pay attention to and not ignore.

So being an educated patient means being aware of everything - including the stuff that people just don't talk about.  Even if you are not afflicted by a condition, you should probably do a little quick reading to get the high level information which is out there.  Not that you need to run out and start talking shit with your friends - but it's something you should be aware of and know when you should discuss it with your doctor.

Be aware of your body and how it functions - and more importantly how it should function so you can help to identify when something just isn't right.

That concludes my shit talking for tonight.

Thursday, September 22, 2011

Where's my apron...


Who doesn't love to eat?  Whether it's some type of exotic food or your everyday comfort food.  Let's face it, food it yummy.

I love to cook.  Actually right now - I will change that statement to say I loved to cook.  Right now it's kind of challenging to muster the desire to want to get in the kitchen and cook when I know I can't eat it.  I know, I know.  But my family still needs to eat.  I am trying to find a way to get over it.

I am trying to force myself to look at my cooking magazines and cookbooks again - watch exotic food shows or just food shows in general.  Trying to re-spark that inspiration and desire within to want to be creative in the kitchen.  There was a time before I recently got really sick - that I would love when my husband would bring home an unusual item and I would have to figure out some way to cook it.

I need to work on looking at food differently.  I know the time will come again when I want to be back in the kitchen whipping up deliciousness.  Maybe I will surprise my family with a meal next week...

Wednesday, September 21, 2011

Conclusions and Decisions...

So my day definitely didn't go as planned.

After being at work for maybe 30 minutes, I had to make the decision to go home.  The pain in my stomach was excruciating.  Before leaving the office, I put in a phone call to my doctor's office again letting them know that I needed some type of pain medication that would take the edge off enough but that I could still function.  While I waited for the return call - I went home and took the only pain medication I have right now, Dilaudid.

My pain slowly lessened and the next thing I knew, I was waking up at 3:30pm.  I had taken the pain medicine at 10:30am.  The doctors office would call me back and let me know that I could take Percocet - but the kicker was I have to go pick up the script since it is a narcotic, they can't mail the script to me or call it into my pharmacy.  My doctors office is about 45 minutes away.  I am hoping tomorrow after my weekly delivery to run down there and get the script - as I am now out of pain medication.

The nausea is intense.  The Zofran has not been helping.  The nurse at my doctors office said that I was supposed to let the Zofran dissolve on my tongue - not swallow them.  I told her that would have been nice to know.  So when I got home, I looked at the bottle.  The directions said nothing about dissolving anything on my tongue - so I called the pharmacist.  The pharmacist confirmed the kind I had was to be swallowed but apparently my doctor five days after I was discharged from the hospital sent them a script for the dissolvable kind.  Thanks for letting me know.  So I will pick that up tomorrow.

Then for some reason tonight I decided to look up the side effects of Mestinon - one of the other meds they have me on.  Most common side effects include : nausea, vomiting, diarrhea, abdominal cramps, etc.  HELLO?!?!?!  Are you kidding me?  I am already dealing with all of that and you add a medication that causes that?

So can you guess what decision I made tonight?

That's right...I am no longer taking Mestinon.  I will inform my doctor when I see him in a couple of weeks.  The nausea and stomach cramps have been what's wrecked me the most recently - so I am going to eliminate something that is known to cause it and see if I at least get back to my 'normal' nausea and pain levels.

We shall see - but for right now, I am taking my treatment into my own hands and making a decision that I think is best for me.

Tuesday, September 20, 2011

Trying to stay within the lines...

So I received a bunch of recommendations of new activities to try - tai chi, artsy kind of stuff (pottery, painting), target shooting, swimming, yoga, etc.  All of which are good recommendations.  I love swimming, however I can't right now because of the picc line in my arm and not being allowed to get it wet.  Sadly none of them have the intensity of training in mixed martial arts - but hopefully whatever I end up doing it will help give me a new outlet.

I had my bandaging changed on my picc line today - and for whatever reason my arm has been burning more than usual at the actual site where the tubing goes into my arm.  It's quite annoying actually.

Today was another "fun" day of dealing with my distended stomach.  The nurse had asked me to give her a summary of what I ate yesterday - scrambled eggs for breakfast, 1/4 cup of plain bow tie pasta and a 1/2 cup of yogurt for lunch, nothing for dinner and about 16 ounces of water for the day.  She looked at me and said, yeah you're definitely not consuming enough.  Ya think?  I didn't fault her for questions or statements - she is covering for Tess - so she doesn't know everything about me at this point.  Today was just some scrambled eggs, some water and a piece of toast.  All of which my stomach rejected.

I think I will go on a mental vacation tonight when I sleep.  A dream full of some of my favorite foods : Grand Marnier Honey Walnut Shrimp, Reese's Peanut Butter Cups, Pancakes, Bacon, Green Bean Casserole, Sweet Potatoes - actually all of that mixed together would probably cause a "normal" stomach to revolt.  A few adult beverages to accompany my meal - my going out drink - a madris.  A night of dancing with my friends - in a cute outfit and cute shoes.

The crazy thing is I am not hungry with all of this - which I still find puzzling.  It's the mental part that is challenging me - knowing that these yummy foods are there and I can't have them.  Or if I say forget it and eat them anyway - that I am going to be in excruciating pain or worse, in the hospital.  It's my senses that get me into trouble - the smell of something delicious cooking or when I am at work and I can smell a co-worker's lunch; seeing these amazing foods while others are eating brain starts going into overdrive wanting to eat them.

But it is what it is I guess.  I need to work on finding a way to deal with everything and in the meantime avoid my favorite foods like the plague.  Just trying to come to terms and acceptance of everything that is gastroparesis and what that means in my life.

Maybe I'll start with a coloring book and some crayons...I'm good about staying in the lines.

Monday, September 19, 2011


The mental challenge.

We all have things in our lives which can completely frustrate us.  Maybe it's the shopping cart with a wobbly wheel.  Maybe it's the line of cars in front of us which are driving below the speed limit and therefore contributing to us being late getting to our destination.  Maybe it's a co-worker not contributing to completing the workload or maybe they've taken credit for something they didn't do.

My challenge right now is obvious.  I have a body that doesn't do what I want it to do.  So what I have to try to do is keep my mind strong.  Some days that's easier said than done.  Being chronically ill can be draining emotionally.  And yes, there are moments where I will go into shut down mode to kind of re-group and re-set my mind to where I need it to be.

I think what I need to find is a new outlet.  I used to be a smoker - I have been smoke-free for two and a half years.  I have never really been a drinker, however even if I wanted to have a drink to relax and unwind - I need to be prepared to deal with the pain of doing so.  I obviously can't be somebody who eats when they are stressed.  All of these are negative outlets - I need to find a positive one.

What I really wish for is that I could train again.  I wish I could explain the peace that I would feel inside following an hour or two of training.  To be completely exhausted and pumped up at the same time.  There are days where I would just like to strap on my gloves and hit the bag for a round.  A round where I could throw round kicks.  Or to grapple my friend.  It makes me sad that I can't train.

I don't know that I could find something else which brings me that much enjoyment and allows me to relieve stress and helps make my body stronger.  But I think that I need to find a new stress reliever - something which my body can tolerate.

Hmmmmm...what to do?

Sunday, September 18, 2011

Houston...we've hit a rough patch

These last couple of days have been rough ones and today was no different.

I have had cramping these past few days and just kinda feeling blah.  My energy levels aren't what they were at the beginning of last week and for the most part I have been spending a lot of time in my pajamas.

So tomorrow I will do the smart thing and I will place a call to my doctor to let him know what is going on.  And then we will see where we go from there.  My hope is that I don't have to drive down to the city to see him - because that completely disrupts an entire day for me.  But if he says he needs to see me, then I will go.  Some days I wish that my doctor was closer, it would make some things a lot easier.

It's times like these where I just wish I had one day.  One day where everything was normal.  Actually if I'm being honesty - I wish every day was normal.  But I can't have that until a cure is found.  So I figure it would be less selfish of me to just ask for a day.  I'm not even sure at this point if I am wishing for a day so I could eat.  I would take a day where I don't have pain or I don't feel nauseous or my abdomen isn't distended.  I'm starting to get used to the not eating part - but I haven't gotten used to the other stuff yet.

Yeah, we've hit a rough patch.

Saturday, September 17, 2011

When you wish upon a star...

So this past week, I had someone make a statement to me.  A statement which if they thought about it, I would hope they would want to take it back.

"I wish I had what you had - maybe I could lose some weight then"

Do you really wish you had what I had?

Do you wish that you could never sit down to a meal with your family and enjoy consuming everything just as they are - but instead you would just sit there and watch them eat?

Do you wish that if you did attempt to eat, that you would be in excruciating pain?

Do you wish that you have to take a handful of medications twice a day to try to help your GI system do some of the things it's supposed to?

Do you wish that you couldn't eat fruits and vegetables, because they could actually put you in the hospital?

Do you wish that you would become so malnourished and dehydrated that you would end up hospitalized for 9 days - 9 days away from your loved ones and then have to come home with a picc line in your arm?

Do you wish that for 10 hours every day, you would have to lug around a bag with your TPN treatment?

I honestly don't think they wished what I had.  Just as I would not wish this on my worst enemy.  What I do believe is that the person wasn't sure what to say to me.  That me standing before them with my bag and an IV line coming from my arm - made them uncomfortable.  That in some way they thought it would make me feel better if they said what they said.  I'm not offended by what they said - I know they didn't mean it.

Here's the thing.  I am still me.  Just because my GI system chooses to not work - doesn't mean that my personality of what made me - well me - has disappeared.  Yes, there are things I can't do.

I can't sit down and enjoy a meal with you.
I can't go out for drinks.
My energy levels aren't at full level, so I may not be able to go on a walking adventure.
I may also struggle to go out for a night of dancing.
I can't train anymore.

But there are still things I can do.

I can sit and laugh with you until our sides hurt.
I can lend you my ear for listening or my shoulder to cry on (just as those around me have offered to do for me).
I can sit on the sidelines as a proud mama and watch my little girl kickbox/grapple.
I can cook a glorious meal for my loved ones (it's challenging mentally, but knowing they are enjoying it makes it worthwhile).

Here's the thing - I can also carry on a conversation about other things which are not Gastroparesis related.  So please don't feel that because you see me that it is the only thing we can talk about.  If you have questions - by all means ask.  There is a lot of information out there about Gastroparesis - but each patient reacts/responds differently - so if you want to know what I am going through - just ask.  But there are lots of other things we can talk about - or if me being sick truly makes you uncomfortable, then we don't need to speak either.  Flash me a smile - and I will flash one back.

But what I do ask is that you think or chose your words carefully when speaking to someone that has a chronic illness.  You may not mean any harm with your words - but you never know what impact your words may have on someone.

Make sure you think before you wish you had something...

Friday, September 16, 2011

Frustrated Fog

Definitely another off day today.

It's so off, I am laying here trying to think what I want to say but the words aren't coming to me.  I spent most of the day in my pajamas again, until this afternoon when I had to get ready to take my daughter to her MMA classes.  Fortunately when I woke up at 5:30am this morning I decided to hook up to my TPN bag right away so I could disconnect before taking her.  It was nice to be free of my bag for the entire evening.

Now here I find myself on the couch again in my pajamas - the only difference is I have my heated blanket.  My circulatory disease is kicking into high gear with the weather changes we are having - so being under this blanket feels extra good tonight.

Too much stuff on my mind - it's starting to give me a headache.  Fortunately I was able to let some of it out tonight, but I am finding it's making me think about it more.  Very frustrating.  Been also dealing with pains in my stomach today - so it's just been blah all around.

Hoping tomorrow brings a better day - not really up for another day like these last two.  Yup, I'm in a fog at this point and my brain is done.  Time to just go to bed.  All though I really do not like to go to bed frustrated, that's what it needs to be tonight.

Thursday, September 15, 2011


Having an off day today.

Tried to eat some stuff today - my stomach wasn't happy about it.  Actually it's still not happy about it.  There is still that mental battle that takes place of seeing something which looks absolutely yummy and you want to eat it - to not eat it knowing that it's going to be a problem if you do.  Today was one of those days where I just said forget it and I ate a little bit of something I shouldn't have.  It tasted delicious and I tried my best to savor the flavor, because I knew it was a matter of time before my stomach would revolt against me.

I have felt blah all day.  I'm tired and I think the past couple of days being as long and as busy as they have been, has finally caught up to me.  My head is pounding right now - stomach is distended - tired.

Tonight is definitely going to be a go to bed early night.  I need to find the balance in not overdoing it - realizing that I am not going to have the same energy levels that I used to.  That I need to pace myself better and be more cautious.  I need to listen to my body better.

So with that, I am going to head to bed.  I will wake up tomorrow and my headache will be gone.  I will hopefully wake up tomorrow and my stomach distention will be down.  Time to dream - hopefully I will be able to remember my dreams.  Something I haven't been able to do for some reason lately.

Well.  Na-nite.

Wednesday, September 14, 2011

Brrrrrring, brrrrrrrrring

Another very long day.

I was in an all day team meeting - which was good - but it was definitely long.  This morning while in the meeting I received a phone call.  It was the case worker at my insurance company.

She started the conversation by saying she was following up with me as she mentioned she would when she spoke to me last week while I was in the hospital.  Funny thing, I don't remember talking to her.  I guess that pain medication was better than I thought.  The rest of the conversation went something like this:

Her : "You know, nutrition is a very important part of you getting back to your self."
Me : "Oh I know, but it's kind of hard to get the nutrition when you can't eat."

Her : "You need to ensure that you do something to relieve stress.  Like yoga or or what's that one that starts with a P?"
Me : "Pilates?"
Her : "Yes, that's it.  You need to be active.  Exercising is a great way to relieve stress."
Me : "Yes, I know.  I used to do MMA - like they do on UFC, minus the cage and stuff - before I got sick.  I know how important exercise is in relieving stress."
Her : "Well I don't want to preach to the choir, you seem like a very educated woman"

Her : "So do you have any questions or concerns?"
Me : "Yes, I need to make sure in 60 days if my doctor deems that I need to continue TPN treatment, that it's going to be covered.  I can't afford $1000 per day.  Are you able to work on that?"
Her : "Well, I am only assigned to your case for the first 30 days.  Then if it looks like you are going to continue to need treatment - then we have a specialist that would have to take over your case.  But if your employer only contracted for 60 days then we can't go against the contract."
Me: "Well I think that sucks that I've been paying all of these premiums and when I need something I may not be able to get it."
Her : "Oh I know, but we can't be out of money.  We have to follow the contract and then make some suggestions for what you could do."

Her : "So how do feel mentally?  Do you want to talk to a behavior specialist?  Do you feel depressed?"
Me : "No I am not depressed.  When something new comes up with my health, I shut down for a period of time.  Then I realize this is my new reality.  There are people counting on me, things I need to take care of.  No I am not depressed."

There was a bunch of other blah blah blah in our 30 minute conversation.  I honestly felt like I got nowhere.  But she did her job and made the call to me.  She can check off that box.  Back into my meeting I went.

Then during the afternoon session, my phone rang again.  This time it was the home nursing group calling to inform that my TPN supplies for next week would be delivered tomorrow.  I was like - what?  They are supposed to be delivered on Fridays.  So the lady informed me that they had already mixed the bags, so they had to be delivered tomorrow.  Fine.  I will now work from home on Thursdays.

Finished up our team meeting - then it was time to race to the dojo to be with my daughter while she trained and so the hubby could head back home and finish up what he was working on.  It was during my daughter's second class that my phone rang - it was my husband.

Him : "One of the chickens is missing.  One of the Rhode Island Reds."
I was actually in disbelief, because he has a tendency to call me up and mess with me on the phone - to see what he can get me to believe.  But he wasn't playing around this time.  One of the hens was missing.  About 10 minutes into our call, he made the statement that I dread hearing "there are feathers".  Something, we don't yet know what, but something got her.  We don't think it's a fox because the fencing wasn't compromised and there were no holes buried under it.  It could have been a hawk.  But normally a hawk will kill them inside the coop because it can't carry them out.  So if it was a hawk, it was a big one.  The feathers he found were outside of the coop.

I really wanted to shut my phone off after that call.

I am now completely looking forward to the fact that I can stay in my pajamas tomorrow.
Thursday deliveries are going to work out just fine.

Tuesday, September 13, 2011

The remedy...

I'm sure you've heard that saying "Laughter is the best medicine" some ways it's true.  It's the best medicine for your mental well being - or at least it feels that way.  Just got done cracking up laughing with the family for the past hour or so.  It started with us cracking up hearing something being discussed on a show called River Monsters...a man had this little fish swim up his penis.  So for a good 20 minutes every sentence had to contain the word penis.  I know, very grown up of us...but it was hysterical nonetheless.  Then it snowballed into my husband and my daughter just being completely loony - that I just couldn't help but laugh.

This morning was my first weekly visit with Tess.  She arrived at my house around 8am, we quickly got set up for my weekly blood draw.  5 vials later - it was time to prep to change the dressing over my picc line and swap out the lines for new ones.  Tess hands me a face mask - I had to giggle.  Had my daughter keep our one dog out of the room, so I didn't have worry about her contaminating anything.  I put my little mask on - Tess had hers.  She started by removing the clear covering that was over the whole site.  Next was the biodisc - this thing is actually pretty cool.  It's a little disc that sits right where the tubing goes into my arm.  Should water get under my bandaging, the biodisc (which is like a little sponge) will puff up but will also activate an antiseptic to help prevent an infection while I was to see my nurse.  Then she removed the adhesive bracket that holds the line in place.  Next it was time to clean everything - which she did with this little wand and sponge thingy.

Tess said the site itself looked great.  Since the biodisc came out, they don't have to stitch the line into place - which personally makes me happy.  The cleanser that she used burned a little when she would swipe it around where the tubing enters my arm - she said this was normal, especially since the site is only a week old.  She applied all new bandaging and I was ready to hook my TPN bag up for the day.

So my day with my bag started later than usually - which definitely made the countdown this evening all that more challenging.  But I am free now and enjoying my time in my jammies, snuggled on the couch with a pillow and blanket.  I am completely looking forward to the time when I can snuggle up on the couch and the fireplace is going - my absolutely favorite thing in the fall/winter.

I think I will sleep with my heated blanket tonight.  All snug-a-bugged up (like my daughter would say).

Pleasant dreams my friends.

And don't forget to laugh until your sides really does help!

Monday, September 12, 2011

I made it through...

Whew!  What a day!

Up early this morning - got the husband to wrap up my arm before he headed out for work.  Finished getting ready and then it was off to work for me as well.

Now I thought I got a lot of sideways looks while out running errands - today took it to a whole other level.  There are a couple of thousand people that work where I do - and the majority of the ones that I encountered were staring me down.  I did my best to hide my tubing, but it's got to eventually leave my side and run into the bag.

I tried to eat twice today.  This morning I got some scrambled eggs - figuring they are high on the protein count and should be easy enough to get down.  I was wrong, my stomach despised the eggs and made sure it let me know it too.  This afternoon I got some french onion soup, but just consumed the broth, my stomach did better with this than the eggs - but it still wasn't happy that I was eating.  So, I decided not to push it for the rest of the day.

Heard from the home nurse dietitian - she was checking in on me and asking a bunch of questions.  This way she knows whether my bag is the right mix or if she needs to up something - like my calorie intake.  I also heard from Tess, my home nurse.  Her and I will meet tomorrow morning before I head to work, so she can change my dressing and also draw some blood.  The blood draw is done every week - as this will let them know what levels of the additives I need included in my next week's order.

Well - it's time for me to go get some sleep.  I have pushed this body to its limits today and now it's time to let it rest.  This includes my brain :)

As my daughter says - Sweet Dreams!

Sunday, September 11, 2011

Trying to chillax...

Finally sitting down today - we went and visited some friends this afternoon.  We hadn't had the opportunity to see their son since our weekends are always so crazy.  So we took the hour ride and went and hung out for a bit.

So now I am just laying here on the couch resting - while my husband is watching a Deadliest Killers in Brazil show.  It's basically about spiders, snakes, assassin caterpillars (these are my favorite - they kill you in 15 hours), the cone snail (that can kill you in 2 hours - you either survive it or die, there is no antivenin).  Not that I would want to ever meet one of them and feel horrible for those that do - but I do find it fascinating that these creatures exist.

Anyhow, so I am laying here chilling - hoping the next hour and a half goes by quickly - so I can disconnect from my TPN for the night.  I have found so far that the last two hours seem to go the longest.  I am sure it has nothing to do with the fact that I am watching the clock like an excited little kid waiting for the school day to end.  I think it's the fact that I am just ready to lose the backpack for the day. 

Every time you have to go out to the other room - pick up the backpack.
Every time you need to use the bathroom - pick up the backpack.
Every time you need to flip the laundry - pick up the backpack.
And so on.

I don't know what is the bigger annoyance - the backpack or making sure the tubing is out of the way and not getting caught on anything.  Like this afternoon for example.  I went out to our garden to pick hot peppers (we have a LOT of them).  So I'm squatting down - cause if I bent over the bag would probably swing around and give me a fat lip - but I didn't notice that I was stepping on the tubing until I went to stand up.  Fortunately - no harm done - lines are still in place where they belong - but I did panic for a second.

It's just all the little things that you don't think about that would be nice to not deal with.  This morning I woke up around 5:30am - still can't get off the hospital hours - but it wasn't until shortly after 8am before I started my TPN for the day.  I was enjoying just being curled up on the couch with a blanket watching TV without having to be mindful of tubing or a backpack.  I actually caught myself sighing this morning as I was hooking everything up.

Trying to gear myself up to return to work tomorrow as well.  Hoping energy-wise that I can make it through the entire day, but I also know to listen to my body.  If it becomes too much, I will cut my time in the office short and will just finish working from home.  I have to make sure I don't overdo it, especially right now while I am still working on getting my nutrition levels back up and in return my energy level.  But I'm ready to get back into the swing things - let's just hope my body agrees, lol.

My relaxation time just got cut short - husband has to drop his car off at the dealer and since the son doesn't have his drivers license yet - that means I need to follow him.  Blah.  The only good part is that when I get home I will be that much closer to being able to disconnect :)

Saturday, September 10, 2011

Be in the know

I believe being an educated patient is a must nowadays.  Whether it is for common illnesses or if you are suffering from a disorder or disease.  I am no different.  At least once a week I am scouring the Internet to see what new information might be available.  I usually come across the same information as far as treatments go, but I am always finding new information from a patient perspective.

Initially I wasn't going to read the patient stories, but then it occurred to me that I may learn something from their experiences.  Someone might mention a procedure that their doctor performed.  For example, there was a woman's blog that I read where her doctor removed her stomach because her case was so severe.  This eventually led to even more severe complications than if they would have just left her stomach in place.  Or the woman's blog that recommended a great backpack to use for TPN treatment (the backpack is currently in my house, just haven't tried it out yet).

Being an educated patient allows me to understand what the doctors are telling me.  Whether it relates to medications or treatments or just general terminology.  Being an educated patient allows me to challenge or question suggestions being made if I don't feel they are right for me.  Being an educated patient allows me to know when the timing would be right to make a change in doctors, if the need arose.

Sometimes being educated can be scary and overwhelming.  There is a lot of information out there on numerous disorders, that sometimes you see everything about only the worse case scenarios.  But again, I think it's important to know that type of signs or symptoms to watch for, especially in my case.

I tend to take the information in stride.  I have had a few people tell me to not think about things, like the what ifs with this disorder.  I can't help it.  I would rather be realistic but hopeful that those events do not occur.  I can't afford to walk around with my head in the sand and ignore things that my body goes through.

Being an educated patient also allows me to raise awareness.  Since being discharged, I have only had one person who knew what Gastroparesis was because her friend has it.  So I take a few moments and share with those that ask questions - the information that I know about Gastroparesis and specifically how it is impacting my life.  Helping to raise awareness.

The G-Pact organization had a challenge of sorts during their awareness week.  It was a Post-It challenge.  They asked patients to right facts about Gastroparesis on Post-It notes and then leave those notes in various places.  In the grocery store, convenience stores, workplaces, etc.  I think I will be participating in the challenge - so if you see Post-It notes while out and about, they might just be mine.

Be educated.  Know your body.  Listen to your body.  You know better than anyone else when something just isn't right.  If a loved one is affected by a disorder or disease - be educated.  Go to the website of patient advocacy group for that disorder and read the information - from the medical point of view but also from a patients point of view.  Understand how their illness impacts their life - both physically and emotionally.  Being educated will help you to help them.

Friday, September 9, 2011

Day 1 and Observations

Came home last night - what a great feeling.  It felt good to be in my own house, all though I didn't sleep in my own bed - I was so tired I fell asleep on the couch shortly after getting home.

This morning was the first, of what will become weekly visits, with my home nurse.  Her name is Tess - she's pretty cool.  We spent about two hours this morning, filling out paperwork and shooting the breeze.  We were waiting on Tom, my home care delivery guy, to bring me the rest of my supplies that we needed for today (and my next week's worth).  The training itself was not very long - I had done a trial run yesterday while still in the hospital (using a saline bag though).  I wasn't expecting our visit to take so long, so I was a little behind schedule getting the errands done that I wanted to - but I did accomplish some of them.

I would run to the pharmacy and get my prescriptions filled - $130 for a one month supply of my three meds - and that's WITH my insurance.  One of them costs me a $100.  I will definitely be looking into either a generic or alternative on that, because that is just too much to put out every month.  I picked up some other supplies while at the pharmacy - tape for when I need to cover my site while showering, a thermometer to take my temperature each day to watch for signs of infection, shampoo/conditioner, and deodorant for my husband (WHITE deodorant - apparently the last one I got him was clear and he wasn't happy with it, lol).

After the pharmacy, it was time to run to the dollar store and pick up some bins and ziploc style baggies.  I used these to organize all of my TPN supplies.  I have bags made up for Morning and bags for Night.  And a bag made up for Tuesday - this is the day that Tess will come see me at work to change my bandaging, take my blood, etc.  So now all I need to do is going into my linen closet and grab the appropriate bag to start or end my TPN treatment for the day.  I also sneaked in a quick visit to get my eyebrows waxed - they were a mess!

After the dollar store I ran over to Kohl's trying to find some new clothes for work that were TPN friendly - and at this point was killing some time before a meeting I needed to go to.  I didn't have a lot of time, so I grabbed a bunch of stuff and hopefully I will like it tomorrow when I try everything on.

I went to my meeting and then made the mad dash home to pick up my daughter from school and then get her to the martial arts school so she could train.  It was a good night for me, tiring, but it was great to be around everyone again.  We'd finish up the night with my TPN machine telling me it was done - rushing to get home to disconnect, lol.

I made some observations today:

- Deep down in my husband's hard exterior, he is a very caring man.  He without complaint or eye rolling, willingly assisted me this morning in wrapping my arm with saran wrap and then taping it off so I could take a shower.  He could have been so helpful because I was standing there with my tshirt off and just hanging around my neck...nah, he just wanted to help.  In all seriousness though, he was very helpful and caring.

- When a nurse asks you if you want to know how much something costs, make sure you really want to know before you start playing the guessing game with her.  Especially, when there is a possibility it may need to come out of your pocket in the future when the insurance stops paying for it.

- People like to stare.  There were so many times today while out running my errands that people were just staring at the tube come from arm down into the big black bag that I was lugging around.  I was curious though what they were thinking - what ailment did they think I had?  Some people actually steered clear from me - it was very obvious - like they were going to catch something from me.

- Clothes shopping no longer includes being able to try stuff on in the dressing room while you are TPN.  Which stinks, because I just recently got into the habit of trying things on BEFORE I bought them.  Oh well.

- Sometimes partial honesty is the best way to go.  Give them enough information, but not everything.  Because if you gave them everything and they went out onto the Internet - the worry that they would be consumed with would be unbearable.

- That black bag is heavy and not the most comfortable to lug around for 10 hours.  But I made a choice, I would rather have my time at night to sleep uninterrupted and carry the bag around during the day - instead of running my TPN at night, getting up numerous times to use the bathroom, worrying about whether the dog or my husband is going to catch and pull on the tube.  But boy is that bag uncomfortable and heavy (my back is actually sore right now).

- My favorite observation.  I have some amazing people in my life.  I was at the martial arts school tonight while my daughter trained.  Countless people came up to me to hug me, to welcome me back, to ask how I was.  Two of those families delivered food tonight - which I may say my husband has been into both of them already (and if my son was awake so would he).  The kids.  The kids coming up to me and saying they missed me and hugging me - it took everything in me not to cry.  One of my little buddies giving me a gift of a purple mini ninja, which I will carry with me always.

Today was a good day.  A good day to be home.  A good day to be surrounded by great people.  Today was a good day.  Time for sleep :)

Thursday, September 8, 2011

Opening your mind...

Day 9.

Day 9 and I am hopefully going home today - or at least that is what I was told this morning.  I am beyond thrilled right now to be heading home.  I miss my husband, my son, my daughter, our dogs and chickens - I miss it all.  I miss sleeping in my own bed.  I miss being in my own pajamas.  I just miss my 'normal' life.

My last day is turning into an interesting one.  The woman in the bed next to me studies and practices numerology, zodiac, alternative medicine, etc.  She is asking me questions like the birth month and date of myself, my husband and my children.  This all came about following a conversation we were having after hearing something on the news.  It is actually very interesting.  It reminds me a lot of when I went to see a psychic.

I am interested to hear what she has to reveal - so far what she has said has been spot on.  She is currently working out the numbers involving our birth dates and the significance of the number one, especially in a sequence.  Now, she could be full of a bunch of nonsense and just some crazy old lady in the bed next to me - but what she has shared so far makes sense.  She could be a con artist - trying to steal my meds or better yet my TPN pump.  Or she could just be a woman who has researched and learned a great many things over the years, as she has claimed, and is sharing her gift and helping the both of us pass time while sitting here.

There is also the part of me that believes in 'supernatural' kind of things.  I always have.  There are certain people that I have a strong connection with that I can foresee conversations that have yet to take place, I have had dreams of events that hadn't occurred yet - and trust me it still freaks me out a little bit when they finally do happen.

So she just gave me our numerology reading - and I have to say, it is spot on.  Kind of an interesting way to end my last day here at the hospital.

Always keep your mind open to other possibilities and information available in the universe - you never know when a message may be sent to you that you absolutely needed to hear and could have missed if you weren't paying attention.

Wednesday, September 7, 2011

Trying to roll with the punches...

What a mix of feelings today.

I had my morning giggle with the handsome student who always makes the first rounds in the morning.  I was feeling pretty blah and getting grumpy - he asked me "what happened to the smile I am used to seeing this early in the morning".  I told him I wasn't feeling well and was getting frustrated on the mix of information I was receiving.

It was shortly after he left that I began throwing up.  I don't know what annoyed me more - the fact that I was throwing up or the fact that this woman was standing next to bedside wanting to ask me questions:

"So how are you feeling this morning"
"Have you gotten sick at all"
"When was the last time you had a bowel movement"
"Do you think the Zofran is helping"
"Have you ever tried the drug Elavil"

By this point I was beyond livid - first of all, why are you talking to me and expecting answers back while I am in the midst of throwing up?  Why are you asking me questions about how I feel when you are watching me throw up?  Just completely annoying.

I would have another doctor come who would insist that I try taking Elavil - which I emphatically refused.  I kept trying to tell him that I had taken that drug before, it made me clinically depressed, suicidal, etc. and I refuse to take it again.  He answers with, well we can have you try to take it here so we can monitor you - again my answer is no.  What don't you get buddy?

Some good news - my health insurance is going to cover the costs of my home nurse care, supplies for my TPN treatment, etc.  That is a relief.

I also had a brief visit with my mom and dad - mom brought be some more underwear (I know tmi - but I thought I was over packing when I packed for a week, but wasn't expect to be here this long).  Got to giggle with the both of them as well before they had to leave for the long ride home.

I am hoping that I am getting closer to being discharged.  Meds which I was previously given via IV are not being given in pill format (including my pain medicine). As long as they are just as effective, then I am fine with this.  Having my meds in pill format also mean they are setting me up to cut me loose - so please keep your fingers crossed that it happens sooner than later.

There is some things I need to go buy when I get out of here.  I need to find a new style of tops to wear that accommodate all of the tubing for the TPN - but also not confine me in what I can and cannot do because I am tied up by tubes under my clothing.  Need to find some khaki style pants for work - something which are universal and comfortable.  I need to make sure that what I am finding in clothes, not only accommodates my new TPN set up but that it also takes into consideration the distention I am still experiencing in my abdomen.  And then on top of all that the desire to still want to look cute in what I wear.  Oh, and I don't want to break the bank having to do it either.

I am ready to get back to my life.  I know I will have to slow down some but I am ready to get back to it.  There are going to be some changes in what my every day looks like - so I will have to accommodate additional time for setting up my TPN bag, accommodate weekly visits from the nursing staff who will clean and re bandage by picc line and also draw blood, being available for when the deliveries of my TPN are going to made.  My life is going to turn upside down a bit - but I am ready to get out of this hospital and get back to my life.

Having a 'normal' life is taken for granted quite a bit.
Be thankful for the blessings that you, I know I am.
Remember that there is someone out there dealing with something harder than you, and I continue to send them prayers for health and strength.
Be aware that your words could alter someones day - either for the good or the bad.

Tuesday, September 6, 2011

Being grateful...

I've been in the hospital now for a week.  Definitely did not think I would be here this long and unfortunately at this point, I don't know when I will be getting cut loose either.  I did ask the one doctor today when they decided to not do the endoscopy - my first response was "So when can I go home".  She danced around it.  Apparently there are some other issues, especially the nausea, that they want to get under control before sending me home and at the end of her statement she said "So we can avoid having to make incisions and placing tubes just yet".  What?!?!  How to do we go from me being nauseous to me needing major surgery?  I didn't ask anymore questions - not wanting to have that conversation right now.

Today was also the day for my picc line to be placed.  I had never had one before but definitely wasn't prepared for what was involved.  Lots of time getting everything set up - basically a mini-procedure done bedside.  The picc nurse would give me some lidocaine in the location she was planning on placing the line and using an ultrasound machine she then used a needle to poke around inside my arm trying to access a strong deep vein.  She was poking around and suddenly I had a sharp pain shoot down my arm and my fingers were tingling - I asked if that was normal and she said no.  We had hit a nerve.  She located a vein and started to thread the line in but I could feel it grinding inside my arm.  I asked her if that was normal - she said no.  She mentioned that the vein wasn't as large as she was hoping for but that I shouldn't have been able to feel anything.  She removed the needle.

Using the ultrasound wand, she searched further up my arm - readjusted the surgical drape covering my arm and gave me another injection of lidocaine in this new location.  Everything was smooth sailing from this point - didn't feel anything else she was doing and she threaded the line up my arm and into my chest.  She would get everything hooked, bandaging and coverings in place and then wrapped over everything with some gauze wrap.  She told me movement was my friend, that my arm would be sore today and most likely tomorrow as well.  They would do a chest xray to make sure the placement of the line is in a safe location (still haven't heard back on the results of the xray, so keeping my fingers crossed that we are good and we don't need to do that over again).

And I should have listened to her when she said my arm would be sore.  HOLY!  As soon as the lidocaine wore off, my arm was throbbing.  The picc line is located on the inside of upper portion of my right arm - in between my so-called bicep and triceps (we'll just say muscles).  I eventually gave in and decided to ask for some pain medicine.  Definitely a smart idea, as it has allowed me to move my arm more which is going to make it feel better sooner.

I have been completed overwhelmed at the amount of support that I have been receiving from various people in my life.

From my client who has been amazing through everything I have ever been through.  Who are completely understanding and have insisted that I put my health first.  Who know that there will be some modifications in how I will be able to dress and that I will most likely have my TPN set up with me.  I couldn't ask for a better group of people to work with.

From those that I went to high school with and in many cases, haven't seen them in years.  I was not the person I wanted to be back in high school and went through a lot of stuff - but who hasn't, right?  But I guess I am still taken back by all of the kind words, prayers, offers to help, etc. from people who haven't seen me in 20 years.

From those at my mixed martial arts school - where I used to train and my daughter still does.  I honestly cannot put into words the emotions that I feel knowing that this group of people - a group of people that are like family to me - are rallied behind me.  We talk a lot about non-quitting spirit and not giving up - and we understand the importance of mental strength to succeed in life.  My situation is no different.  It is going to be critical to my success that try to remain mentally strong.  Not that I am not going to have days where I am an absolute mess, where I am frustrated about being sick - but I have this group of people who are willing to help hold me up while I find my strength again.  People offering to make meals for my family - so that I don't have to worry about cooking or more importantly right now don't have to prepare food that I cannot eat.  Something which I am still struggling with.  People offering to do grocery shopping, run errands, ensure that my daughter gets to her training - even if it means taking her NJ to get her Joshu fix.  I am just blown away at this amazing group of people and am blessed every day to have them as part of my family.

And I have to do a special call out to my ninja sisters.  This group of women who lets me break down when I need to - lets me shut down when I need to - and who love me anyway.  Women who come just to hang out with me while I am here in the hospital.  Women who will text my mom, to let her know that they are thinking of her - knowing that even though I am a full grown adult, that my mommy still worries about me.  Women who just know me and let me be me.

And then there is my family by blood.  My husband who is worried but who is staying strong for me - who insists that I get the care that I need and that the doctors are crossing their Ts and dotting their Is.  My children.  My son, while quiet, loves me and is doing everything he can to help where needed.  My daughter, who sends me numerous text messages letting me know how much she misses me and loves me.  My brother who comes and sits with me, and all though the beginning of our conversation starts with his leg bouncing a mile a minute and I can see the look of concern in his face - him being there with me means more than he will ever know.  My parents.  My parents who drive my family down here, so that the fun car doesn't have to be brought into the city.  My parents who will make an early morning run down to bring me some supplies because mother nature decides to be just a little bit more of a pain in the ass.  My mom - who takes my daughter shopping for school supplies, takes her to the book store, buys her a new lunch bag, comes to my house (even though my husband took the day off) to make sure my daughter's first day on the bus is a smooth one.

I am fighting every day against this disease, not only for myself, but for all of these people as well.  I want to be around for a long time.  I've had a few people these last few days comment to me about the people in my life who are supporting me - and that the reason it is happening is because what you put out into the world is what you get back.  That they know if the roles were reversed and it was my former classmate, co-worker, friend, or family member in this situation that I would be doing the same for them.  And they are right - I would be there for someone in a heartbeat.

Be there for those in your life you care about - not because you have to, but because you want to.  You would be surprised at what your words alone can do.  I have cried a lot this past week, but most have been tears of amazement that I am surrounded by these wonderful people.

Monday, September 5, 2011

I's Monday

Starting to lose track of what day it is - which happens to me any time I am not required to look at the date or the day of the week on a regular basis.  Happens even more so when my days seem to be a combination of the same stuff over and over and over and over again.

Today however - had its shake ups.

I woke up this morning to discover that the IV line they had been able to put in yesterday, was failing.  My arm was sore and tender to the touch and when they tried to flush it, it was very painful.  So my PPN treatment stopped.  But that was just the beginning.

After I had them remove the bad IV line, I went in and took a shower - figuring getting cleaned up for the day would help me feel better somehow.  As I was taking my shower, I noticed that I was now standing in water - unfortunately I couldn't see what the issue was, because I didn't bring my contacts to the hospital with me and without my glasses, I am blind five inches past my face.  So I quickly hurried up and finished my shower.

Jumped out of the shower and brushed my teeth.  Same thing - the water in the sink wasn't going down.  So the nurse was in our room, as she was helping the woman in the bed next to me get cleaned up - she leaned over to me and said I see your toilet is clogged, I will call maintenance.  I said I don't know anything about the toilet but the shower and sink aren't draining.  Well, I don't know which part of that she didn't understand - but she decided to let the water in the sink run so it would warm up so she could bathe my roommate.  She then ducked out of the room to give them the update on the sink and shower - when I hear water hitting the ground.  I look over the side of my bed and here is water coming out from under the doorway towards my bed.  I jumped up - shut off the sink which was overflowing because the nurse had left it running.

It was around this time that my mom arrived - dropping me off some items that I needed, but that couldn't wait for when my husband decided to come to visit.  Shortly after her arrival - they moved my roommate and I to another "wing" on the floor.  We got settled into our new room and the head of the nursing came around and gave us "apology" cards that had Wawa gift cards in them and apologized for any inconveniences.  Now to find out how much that bad boy is worth - probably a cup of coffee - but a cup of coffee I will enjoy when I get out of here.

One of my friends and her alien husband arrived.  Accompanied by a stuffed dog that her daughter wanted me to have to keep me company while I'm here.  We talked - brought them up to speed on what was going on with me - what is planned for tomorrow.  We talked about my current mind frame and how this was impacting my husband and children.  We caught up on other happenings going on in our lives - I wanted to make sure we talked about some 'normal life stuff' too.

My husband and my daughter would show up - having to bring my husband's truck down to the city (we don't bring the fun car to the city) - my son opted to stay home since it is not a comfortable fit for two full grown men and my little girl.  It would give me the opportunity for my husband to meet the alien.  I knew my husband was nervous, he is always quiet around people the first time he meets them - plus he is meeting them while his wife is laying in a hospital bed - makes for interesting times.  My friends would leave and my family would stay for a bit longer before we all decided to wrap up the visit.  I was tired and I knew they had about an hour ride home and it was rainy - and there is lots of stuff to do with tomorrow being the first day of school.  Something which I am going to miss.  Something which I am not happy about missing.

My great aunt and uncle would come to visit.  I was supposed to attend their 60th Wedding Anniversary party last weekend, but couldn't because of the effects of Gastroparesis.  I could not even pull together enough strength to just get ready to attend.  It made me sad, I have missed out on a lot of family stuff lately because of the way I feel.  There was a lot of family which was there.  So for about an hour I would catch up with them both - learn some fun fact information from uncle (something he has always been known for).  It was a great visit with them, besides the fact that it was happening in this hospital with me laying in this bed.  They would also bring me a gift - some comfy pajamas and slippers.  They know me so well, lol!

My nurse tonight was insistent on trying to start an IV line again - not for the PPN - but to use for pain medication, nausea medication, etc.  It hurt, but she got one started.  So I have received my pain meds and nausea meds - ate the water ice off of my clear liquid diet food tray.  And sipping some hot tea.

Preparing mentally for tomorrow.  Right now I am scheduled for an endoscopy - just to look around and make sure nothing new is going on in my throat or stomach.  Also maybe help find out why I was vomiting large pieces of blood.  I am also scheduled to receive my picc line tomorrow.  I ordered a special backpack last night - one that I can use to carry everything around that I will need when I am discharged from here.  I am trying to get everything straight in my head of this new reality - I am almost there.

I have been amazed at the out pouring of support, well wishes and love that I have been receiving from people I see on a daily basis and those I see less frequently and those that I haven't seen since high school.  It is comforting to know.  It also helps me to know that I have now brought some level of education to them about Gastroparesis and that I am doing my part in helping to get the word out - hopefully a cure will be found.

Sunday, September 4, 2011

An even mix of highs and lows...

Another fun-filled day in my hospital adventure.

Last night once I fell asleep, I actually got a few hours of sleep - surprisingly.  The gentlemen across the hallway was quite the entertainment again.  The male nurse, Sean, who was responsible for taking care of each of us - had to quickly leave my room and run over to the other guy's room because once again he was trying to escape his bed.  Well, Sean was being polite as he tried to explain the escape artist why he was once again being strapped back down to his bed.  For whatever reason, maybe it was because Sean's crotch was at the escape artist's head height - he decided to start yelling and accusing Sean of sexually molesting him.  Sean threw his hands up in the air, laughed and walked out of the room and said I'm done with all of this.

So I felt rested enough this morning when I woke up - that I decided to stay up.  Surprisingly, I was up before the GI team was out and about making their rounds.  Was trying to stay in a positive mind frame knowing that today had the possibility of presenting with some new challenges.  My nurse for today was Jill.  I like her - she is a bubbly young girl with cute curly hair that reminds me of my youngest niece.

Jill came in letting me know that I needed to have some Potassium treatments this morning - two bags worth.  I asked if I could take a shower at some point today - she said that was fine and we decided that I would start the Potassium treatment afterwards.  I took my shower - doing the best I could with really only being able to use one arm because of the placement of my IV - so I am sure I missed a few spots while trying to shave my legs :)

After my shower and all cleaned - Jill came in and we started getting set up for the Potassium treatments.  She flushed my IV line and we immediately saw that I was having a problem with the line.  Yup - needed a new IV started - oh joy.  Twice she tried to start a line and both times the blown veins.  She asked another nurse to come in and see what she could do.  She would try a total of four times - each time, blown veins.  So I sat and waited while we came up with a plan. 

Actually I sat and cried while they figured out a plan.  It was another one of those temporary moments where I just didn't want to do this anymore and I just wanted to be healthy.  I texted my friends that were planning on visiting today, my husband, my parents and my brother - to let them know what was going on.  I sent my husband the following message "They're having a problem with my veins blowing out.  Waiting to hear if the doc wants to try for a vein in my neck or just do the picc line now".  He responded with "Snort it then".  He had no way of knowing, but I needed that laugh more than anything at that moment.

Shortly after that, another nurse came in to give it a try.  Apparently the doctors felt that if she couldn't get a line started, then it would be time to do a picc line.  So she tried the first time with a vein that was on the back side on my right hand.  Blow out.  Then she searched and searched and found a vein on the back side of forearm - a vein that nobody has ever tried to utilize before.  She held the needle up in the air and said "God, we need this one to work please, this girl has been stuck with enough needles".  This was going to be needle number 8.  Well her prayers must have worked, because the IV worked.

So the day continued.  A nice visit with my brother.  A nice visit with a fellow ninja.  I would finish up my Potassium treatments and now they have just started my PPN.  It's a huge bag of what looks like milk...maybe I should ask them for some chocolate syrup.

I now have another new roommate - this will be #4 this week.  Her husband keeps peeking around the corner and just said to me a moment ago, we are the nosey kind.  I just smiled and thought, don't make me be the roundkicking kinda :)

Another roller coaster of a day - emotions kind of all over the place.  Hopefully that will at least stabilize soon.

Saturday, September 3, 2011

Ah, the neighbors...

Just woke up - again.

Staying in the hospital does horrible things for your ability to sleep.  There are the 1am visits from the lab to draw my blood work.  The 5am rounds from the team of doctors.  There's also the fun roommates and people in the rooms around you.

The first woman I had in my room talked non-stop - to me, on the phone, to the nurses, to the walls - I think to anyone she could get to listen.  Her boyfriend that came to visit, well we will just say he was just as entertaining but on a much higher level - volume level that is.  Then there was her snoring and talking in her sleep - on top of her lung hacking.

The second woman that I shared this room with - didn't talk as much - but she loved her TV.  Loved her TV and light that they needed to be turned all the way up for the entire night.  At one point I tried to put my TV on and it was not worth it for how loud I would have had to make it to just be able to hear it over hers.

The biggest 'entertainment' these past two days, has had to come from the man that was admitted across the hall early this morning.  He doesn't understand the concept of the call button for the nurses - instead he insists on yelling for people when he needs them.  The doesn't understand that concept of the fact that they have put a catheter on him - something which he is not happy about and hasn't threatened to pull it out himself.  He doesn't understand that he is a fall risk - and he has actually fallen 4 times out of bed.  He doesn't understand why they had to finally resort to restraining him to his bed.  He is very vocal with very select words when yelling at those around him.

The entertainment has kept me somewhat distracted - somewhat.  The results of my CAT Scan came back - and it didn't show any obstructions (which is what they were looking for, I guess).  I will be in the hospital through at least Tuesday - which means I will miss out on the Labor Day Weekend and more importantly being there for my daughter on her first day of school.  Fortunately my mom is going to go up to the house and be there with her - since my husband and son have to leave so early for work.

They started me on a PPN treatment today with the high probability that I will be leaving the hospital on TPN treatment.  These are both basically how I am taking in my nutrition.  Which if it means that in order for me to have an improved quality of life, more energy, etc. - than I have no problems walking around hooked up to an IV all the time.

I do have to say that one of the things which has made this hospital day go a lot smoother than those in my past - is the overwhelming support I am receiving from family and friends.  Between phone calls, text messages, facebook posts and visits - it's what is helping me to keep my chip up.  Today I had a visit from two of my ninja sisters - which my apologizes to them for me fighting to stay awake (it's pretty bad when it is quieter during the day than it is at night).  And then I also had a visit from my husband, son, daughter and my parents.  I hate seeing people in situations like this - but I also know that they are my reality check that I will be out of here soon enough and back home.

Ah, to be back home.  Well, it's that time again that my eyelids are heavier than bowling balls and I need to go sleep.  Thank you for the support and for helping to raise awareness.