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.

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.

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.

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 cookie...so 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.

Just talking shit...

Literally.

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.

Where's my apron...

Food.

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...

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.