Friday, December 30, 2011

So far, so good...

I finally started using the patches that the newest doctor gave me - they are for nausea.  I had a period of time after seeing him that the nausea was tolerable, so I hadn't bothered trying them.  Then when everything started up again in full force with my stomach it became a matter of wait until the appropriate time in the event that I have a reaction to them before giving them a try.

I was reading the packaging material that came with them.  Turns out they are typically used for patients who are undergoing chemotherapy.  The patient would put the patch on two days prior to starting their treatment and then rotate the patch every 7 days.  The concept of the patch is that it interferes with your serotonin levels, thus basically tricking your brain into telling your body that you are not nauseous.

Of course when I get my script filled there is a big warning from the pharmacist because the dose exceeds the daily recommended amount.  That's because my doctor has me replacing my patch every 5 days instead of 7.  So I finally put one on this morning because I really just couldn't take the nausea any longer.  I am not a fan of taking medication if I can do without it - and I finally couldn't take it.

So now we wait and keep my fingers crossed that this brings relief.  I would hope by at least tomorrow that I start to see some improvement - because I am sure it takes some time for your serotonin levels to be altered enough to feel a difference.  The most common side effects seem mild enough - it's the allergic ones that you have to watch out for, but like I said so far, so good.  I've always gotta giggle a little though, as almost every medication that they give a gastroparesis patient has either side effects of constipation or nausea - two things that most gastroparesis patients battle on a daily basis.  I guess this is how people can so quickly end up with an entire medicine cabinet full of prescriptions - one to counteract the side effects of the first and so on and so on.

I will report back more on the patches as I see how they work for me - in the event you are reading this and are also a gastroparesis patient or know someone who is.  It's worth a shot I guess - anything is better than constantly feeling nauseous.

Thursday, December 29, 2011

Everybody remain calm, put your trays in the upright position...

Staying calm on the outside is always so much easier than staying calm on the inside.  Don't ever let them see your fear - you gotta remain tough in your mind.

Sometimes that is easier said than done, but I'm trying.  The harder part I think is staying strong in your mind - you can always fake it to everyone around you that you are ok, put on a smile and say that everything is great.  All though, those that really know me can usually see right through that - even if I attempt to cover up what I am feeling.

But it seems like the big belly is making its return and at least for now is not showing any signs of leaving any time soon.  The nausea yesterday was pretty bad and I'm not feeling so hot this morning either.  When I get home this afternoon I will plan on trying the nausea patches - don't want to put one on yet as I don't know what kind of side effects I could potentially have.  Besides, I'll be taking my daughter out with a bunch of friends shortly to go ice skating and I don't want to put a damper on those plans.

So for now, it's try to stay calm in my mind mode and not let stress work its way into my brain.  Tray tables are up and we are back to eating bland soft foods - and by we I mean me - cause I need to get moving and make these girls some waffles for breakfast.


Saturday, December 24, 2011

Santa, I've been a good girl this year...all I want is...

What is it about being a woman - a mom and wife - that makes us push our bodies beyond its limits?  That instead of listening to our bodies to rest or slow down - we continue to push ourselves because we have either over committed or are just trying to tackle too much by ourselves?

I found myself in this situation today.  Most would think that what I tackled today was not much and why would I think that I had done too much.  Add into that the amount of time that it took me to accomplish it and some might wonder what the heck I had been doing all day - that I should have accomplished a lot more.

Grocery shopping.
Unload car and put food away.
Take all the dirty laundry down to basement.
Sort laundry.
Do 7 loads of laundry.
Clean family room. (and by clean, I mean clean - not just straighten up)
Clean dining room.  (see above)
Clean hallway bathroom.  (see above)
Straighten up kitchen - cause I'm just gonna trash it again tomorrow.
Clean out and organize my closet.

So I started all of this at 10:30am and eleven hours later, I am sitting down for the first time.  11 hours.

The more I moved, the more my stomach became distended.  The empty feeling I was experiencing this morning, hasn't gone away.  At one point I did have to stop for a few moments and eat a peanut butter sandwich - something with protein because I felt like I was gonna fall over.

I'm struggling again these past few days.  Something which I am not happy about.  Something which is weighing on my mind a bit.  As a person with gastroparesis, someone who has already been on TPN treatment - it sits in the back of my mind the fact that I could always need to go back on TPN.  I'm experiencing some of the same sensations I did before.  I need to start checking my weight again - make sure that I don't start dropping again.

All though I wasn't smart today about pushing my body beyond its limits - I will be smarter about seeing a doctor if the time comes that it's warranted.  Last time I waited too long and my veins were in bad shape - don't want to go through that again.  But I'm not there yet and really praying that I am just having a rough couple of days and that this is going to pass.

I would be completely happy to just wake up tomorrow feeling better - no presents needed - just waking up feeling normal.

It's Christmas Eve and I need to break this trend...

Well - I am still in the same position I have been for the past few days.

My stomach is still distended and I am just feeling blah.  My energy levels are low but I think that in part is due to that I have not been eating as much as I have previously.  My appetite is strangely gone again.  I woke up this morning with that kind of 'empty' sensation again - like I feel hollow - not really sure how to explain it.

So right now, I am waiting for the excedrin to kick in and take away my pounding headache.  Will get up and have some toast and maybe some coffee - hopefully the caffeine will help.  And then I need to get moving.  Too much to accomplish today and I need to find the energy to do it.

Feeling like I am slipping back into where I was before - something which I just cannot have happen.  Too much going on and I need to be operating at full capacity - or at least 80%.

All I want for Christmas is to be healthy.

Merry Christmas Eve!

Thursday, December 22, 2011

Thank goodness for pain medication...

Well I woke up this morning with the same large distended belly that I had gone to sleep with last night.  Not the way I wanted to wake up.

Actually, I woke up at 2am and didn't fall back to sleep until right before my alarm clock went off.  Not the way I wanted to sleep.

But I got up and prepared myself for my long day of running errands...last minute holiday shopping to finish up everything on my list.  I went and completed as much as I could before my body was basically just tanked out.

Fortunately, my pain medication was finally available at the pharmacy to be picked up.  The pharmacy would be my last stop of the day - came home, took my meds and then it was lights out for me.  I ended up crashing on the couch for about 2 hours.

Still not a 100% - belly is still distended.  Really really hoping that it goes down and that it's not here to stay.  For now, it's time to get some sleep into this body of mine - the next few days are going to continue to be crazy and busy - but fortunately I have my medication to help get me through.

Wednesday, December 21, 2011

I've seen better days...

Today was not one of my better days.

I try really hard to kind of eat the same things each day - hoping my body will adjust to the foods or tolerate them a little better.  Foods which for the most part (at least in my eyes) are pretty bland.

Breakfast was eggs.  Lunch was turkey and cheese.  Had my usual coffee this morning and some water.

So why am I sitting here with a massive stomach that I have been sporting for the past 8+ hours?  I knew it was going to be an issue, as I sat at my desk at work and felt the intense stabbing pains in the middle of my back.  The pain would continue to intensify.  Working it's way straight through my back into my abdomen.

Unfortunately, I am out of pain medication.  I called my doctor's office explaining that I cannot get in for an appointment but needed him to call in a refill on my medication.  As of yet, the script hasn't been called in.  So here I lie on the couch with my massive belly, breathing as shallow as possible because it hurts to abdomen so distended that it is pushing up into my chest wall and making it painful to breath.

For the most part I have been doing pretty good for the past few weeks, with very minor episodes.  So I am hoping that this is something which will be gone by tomorrow and isn't an indicator that things are acting up again.  I don't need this to put a damper on my holidays or my desire to get back on the mat to take a class.

Keeping my fingers crossed for a better day tomorrow.

Tuesday, December 13, 2011

Hands up, elbows in my cups, pencils out...


My life continues to be a whirlwind.  A whirlwind of activities, a whirlwind of emotions.  I am having to make conscious efforts to not allow myself to become stressed by everything going on in my life.  I find that when I allow stress to work its way into my mind, that it in turn poisons my body.  My body deals with enough challenges, I don't need the added challenge of stress.

That sometimes is easier said than done.

I would say for the most part that my challenges with gastroparesis have been mild lately.  I am trying to stay with more bland foods - which in and of itself is quite boring.  Who wants to eat egg whites every morning?  Or a plain turkey sandwich for lunch?  Actually it sounds very much like the nutritional program I would follow when I would train.  Except - I wasn't drinking coffee or caffeinated drinks like I am now to try and get that little extra rush of energy.

I have also come to a realization lately.

I need to get back out onto the mat.  This past weekend was pretty chaotic, so I plan on talking with my Sensei this weekend about me trying to take a class again.  It's going to be one of those things that my ability to take a class will most likely be determined on how my previous week has been with gastroparesis.  I in no way want to do anything that would land me in the hospital.  But at the same token, I need a stress reliever.  So we shall see.

Out with the bad.
In with the good.

Friday, December 2, 2011

Can't hold me down...

Continuing on.

Living with a chronic illness, which has no cure, as I have said before is a difficult thing to do.  And unless you live in chronic pain or are chronically ill - I am not sure you can ever truly appreciate what someone goes through on a daily basis.  Now that doesn't mean that I don't think that you can't possess empathy for that person - wanting to help me them, pray for them, etc. - I just think there is no way that you could know everything that feel and deal with.

As someone who lives with chronic illness and pain - I don't necessarily want everyone to know everyday what I am thinking or feeling though.  It's not because I am embarrassed.  It's not because I don't want someone to be educated about my illness.  It's simply because in that moment - I am trying to continue on with a normal life.

There are times in my journey where something new is determined in my prognosis or something just knocks me for a loop - in those moments I do not want to talk about anything.  I need time to adjust and to absorb this new information and figure out what my new 'normal' now means.  And once I get past that hump - I'm in continuing on mode.

That is where I am at right now.  My life is too busy and full of too much stuff for me to get wallowed down in deep thought about my illness.  If I allow my mind to go down that path right now, my life will be disrupted.  Right now is not a time for me to shut down and process.  There are times when that is appropriate - right now is not one of them.

Time to stay strong.
Time to stay positive.
Time to focus on other things.
Time to feel normal.

Sunday, November 27, 2011

Trying to celebrate the celebrations...

Celebrations and food and alcohol.

So this past week was Thanksgiving.  Most years we are not home for Thanksgiving, or if we are we have my family over to my house to eat.  This year my parents and my brother and his family were all out of state visiting my grandparents and aunt.  So it was a Thanksgiving that we celebrated just ourselves - my husband and two children.

I got up early and my daughter helped me dress the bird.  After realizing two hours later that I had accidentally shut off the oven, we were back on track and started cooking the side dishes and more importantly the desserts.  My daughter set the table and just as I was getting ready to put everything out on the table - my stomach started acting up.  Meaning my stomach blew up and I was now sporting my watermelon sized belly.  I finished putting everything on the table and then headed straight for the couch to lay down.  I was in too much pain to even sit at the table with my family.

They enjoyed the food - turkey, gravy, cranberry sauce, mashed potatoes, mashed sweet potatoes, pineapple stuffing, sauteed mushrooms, macaroni & cheese, green bean casserole, and bread - everything homemade from scratch.  For dessert, my husband had requested cherry cheese pie and my daughter requested an apple/pear crisp (my son was content with the choices already made).

I was hoping to at least enjoy some of the mashed potatoes or sweet potatoes - but my stomach just wasn't having it.  I was quite disappointed, but part of me was at least happy that my family was happy with the meal even though I couldn't have any.

Then on the evening of Black Friday - it was my 20 year high school reunion.  Now there were people there who knew what was going on with me - but really the only ones who knew were those that follow me on here.  I was thankful to be at my reunion without my picc line or my TPN bag - something which I had been worried about - but it would have been nice to be able to have a drink.  Since getting sick, I have found that when I drink - the side effects and pain are just not worth the brief enjoyment.

So I spent the night drinking water - which some people thought I wasn't drinking because I was pregnant.  I immediately said NO - and told them do not start those rumors.  But I didn't go into explaining to them why I wasn't drinking.  I also didn't eat any of the food they were serving - because I didn't want to deal with my stomach blowing up even more.  It was bad enough that I didn't get to wear what I had planned to - because my stomach was acting up - fortunately I was able to find something which I think did a fairly reasonable job of covering up my distended stomach.

Everyone headed out to a local bar afterwards - which I wouldn't have minded going to hang out with a couple of people - but knowing that I couldn't drink and that everyone else would be - I just wasn't in the mood.  So I headed home instead and tried to fall asleep.

It's times like celebrations when there is lots of food and drinks that I really hate the fact that I have gastroparesis.  That I wish I could be like everyone else and just enjoy the festivities to their fullest.  I am not fully there mentally yet, that I can just be completely relaxed and enjoy myself while seeing others eating and drinking.


Friday, November 18, 2011

Can't say he rushed me...

I'm not even sure where I left off the last time I blogged.  I guess I could stop typing and go read my last entry - but I am too tired and too lazy right now to do that.  So, I will bring you up to speed on what is happening in my gastroparesis world today.

Today was finally my appointment with the new gastroenterologist - looking for that second opinion, new treatments, something.  Well - I got all that - and some.

I arrived shortly after 9am - my appointment wasn't until 10am, but I knew I had new patient information to fill out and also wanted to make sure that I gave myself plenty of time to get to this new hospital as I had never been there before.  I pulled into the parking garage thinking that I definitely liked the layout of this garage a lot better than the other one.  For those of you who know me, you might remember me having a run-in last year with the ticket reader in the parking garage at the other place.  THAT was not a good day.  So while it sounds silly - my comfort ability and not feeling claustrophobic in the parking garage is a plus.

I made my way through the building to the section I needed to be in, jumped on the elevators and headed up to the 3rd floor.  I had arrived at the Digestive Disease Center.  The waiting room was very comfortable, the staff at the front desk were very pleasant and helpful.  I needed to the use the bathroom - that was clean (and smelled clean) as well - another plus.  It would be after 10am before I would be taken back - but I expected that when I was going to be meeting with the Chair for the Research Committee/Director for the Center.

His nurse took me back - got my weight (grrrrrrrrrr) - led me to the exam room where she got the rest of my vitals.  Shortly after she left, the doctor entered the room and asked that I fill out a questionnaire while he was seeing the patient before me.  He should have asked me to fill out the book - cause that's what it was.  He would even make it into the room before I had the chance to complete it.

He asked me about my heritage.  Asked about my other medical conditions - at which point he told me that the fact that my joints hyper-extend is actually linked to GI issues.  Found that very interesting.  We discussed the medications and treatments that have been tried over the last year or so, my hospitalization in September and my recent TPN treatment.

During our conversation I found out that he knows my current gastroenterologist.  He was actually shocked at what I had experienced, but we didn't dwell on it and continued to discuss my medical case.

I was happy to hear that he had some more tricks up his sleeves.  For starters some new medications - I will wear a patch that will last for 5 day intervals.  This will hopefully help with the nausea.  He is also putting me on Tramadol for the pain - hopefully it's strong enough.  I have taken Tramadol in the past and had issues with it not being able to bring my pain to a tolerable level.  But I will try it again.  There are a few other medications which haven't been started just yet - but are in his arsenal following some tests that he is ordering.  Drugs like Domperidone and Nortriptyline.

So now the tests.  I left his office and went downstairs - had some blood work drawn.  Was registered and sent to another part of the hospital for an EKG.  Left there and went for a XRay of my abdomen.  It took 4 hours to complete that.  Went from what I thought was going to be a quick first time appointment to a 6 hour day down at the hospital (that doesn't include the 2 hours of driving either).

Then in a few weeks I will be driving down there 4 days in a row.  He wants to do what's called a Whole Gut test.  It's similar to the Gastric Emptying but much longer.  Basically on Day 1 I will arrive very early at the hospital where I will eat some type of radioactive meal.  Following eating the meal they will take pictures of my stomach over a course of 4 hours.  This will give the doctor a better idea of how long it is taking for food to leave my stomach.

Then on Day 2 and 3 - they will take more pictures, however these pictures will focus on the progression of the food moving through my small and large intestines.  Day 4 will finalize the series of pictures of the food hopefully making it's way to the end of my large intestines.

The purpose behind the Whole Gut study is so he can see and confirm any issues going on elsewhere in my GI system - other than the spasms in my esophagus and the confirmed Gastroparesis.  Now there is a final part to this test - however I am choosing to leave out the details of what is involved there - basically because I am not happy at all about having to go through it.  What I will say - and this is just from an education standpoint, because I haven't heard of this before in any other Gastroparesis blogs/writings that I have come across - is that the test is a manometry test and it won't be the esophagus like I had last year.  Nuff said.

So all in all - besides the fact that I am exhausted from spending so much time down there - it was a good visit.  This doctor is very much about the science, thinking about studies that are currently going or where they have seen improvements for patients - he has tricks up his sleeve still where I had thought maybe my options had run out.  I think at this point I will continue to see him - see where his tests and treatments lead me.

Oh - and I had found out yesterday while reading through my medical records - that I have a hiatal hernia in my stomach.  Funny thing, well not really funny, it was discovered back in August during my Botox procedure - but my current gastroenterologist never told me about it.  Kind of another reason why I think it's time to make a change in specialists.  I did speak to the new guy about it today - and he said that hiatal hernias are actually common in people with GI issues.  Made me feel a little better - but still not sure what we do as far as monitoring it, etc.

So a lot happened today and that is good.  As long we continue to make progress - continue to try everything that is available - well, except the stomach pacemaker (I ain't doing that one).

A little bit of hope has returned - I have more stuff to try.

Sunday, November 13, 2011

It's the little things...

It's been a couple of days since I had my picc line removed.  The timing couldn't have been more perfect - because these past few days have been super busy and it was so nice to not have to worry about carrying my TPN bag around.

I have been trying to focus on finding foods that my stomach will tolerate without issue.  So far, that quest has not yielded anything - but I am eating everyday and am dealing with the side effects as best as I can.  There is a portion of this condition which is the mental battle and some days that can be the tougher battle to fight.

I have to force myself to eat.  I do not have an appetite - my stomach doesn't growl.  So I need to make sure I continue to eat, even if my body isn't asking for food.  It's the only way to try to prevent the picc line from returning.

In a few more days, I will be visiting the new gastroenterologist.  Hopeful that he might have some additional treatment options to try - even if it's only one more option - it's more than what I have right now.  Really keeping my fingers crossed that he has a good bedside manner - as sometimes with these doctors who come highly recommended, their egos can get the best of them.

For now - things are good.
I am not in the hospital.
My picc line is out.
My food is staying down.

I will look for the positives.  And now....

my bed is calling my name.

Tuesday, November 8, 2011

A positive step...finally

So I got up this morning and jumped on the scale.  All I could think was - finally.  I was down three pounds from last week.  Now if it wasn't for the tremendous weight gain that I have experienced since coming home from the hospital back in September, I might be a little worried about that - but I am still at a very 'healthy' weight (meaning I have some to lose).  In the past two months, I have gained just over 15 pounds.  Which when you consider that I have been pretty much surviving off of TPN bag feedings - that is quite an increase.  I really think my body just knows that it was in trouble, so whatever I consumed it made sure to store it so that I would have a reserve to pull from later.  Either way, definitely nice to start the morning off with seeing a lower number.

So I jumped on the phone - hoping to catch my dietitian (Gina) on the phone, but knew I would get her voicemail.  I left her a message with my weekly weight and also let her know that I had thought about it last night and I would like to move forward with maintaining my picc line this week so that we could pull it next week if all goes according to plan.  About 30 minutes later my phone rang and it was her.  We went over my numbers and she told me that she would give the doctor a call - that there was the possibility that they would just decide to pull the picc line today.  She asked how I felt about that and I answered that I would be fine with it being done today or next week.  She said she would touch base with my nurse if they heard back from my doctor before my appointment.

11:00 rolled around and it was time for my nurse (Vanessa) to show up.  Vanessa had never been to my house before since we had always met at my work, so I anticipated that she wouldn't get here on time and might get lost trying to find the place.  A few minutes before 11 she called me to say that she had just gotten off the phone with Gina and that they were still waiting to hear from my doctor.  She said she was going to slow down heading over to my place in hopes of getting the phone call before coming to my house.

A little after 11:00, Vanessa showed up.  I knew because the dogs started going nuts that someone was at the house.  I opened up the front door and was greeted by Vanessa who was smiling from ear to ear.  She looked at me and said -

"So, you ready to have a great day?"

Music to my ears (and I fought back the tears)!  I was getting my picc line pulled.  As she prepped everything, removed the dressing from arm, I asked her if it was going to hurt.  I thought it was a reasonable question since it was basically this tubing which has been sitting inside my body for the last two months that goes from the middle of my arm, up and across my shoulder, and down into my chest.  I thought it was reasonable since my body has been trying to close up around this tube - why wouldn't it maybe be adhered to something inside me.  Right?

Well, it didn't hurt.  Actually I couldn't really feel anything at all.  I did watch though - I am kinda weird like that.  She slowly pulled out this really long white tube which was slimed up and bloody as it came out.  The tube itself was about 15 inches long.  She held a compress on my arm for a few minutes to stop the bleeding.  Had gauze which was covered in a betadine goop which was applied over the hole now left behind in my arm.  And she finished by covering it with a bandage that I have to leave on for 24 hours.

She measured the tubing - made sure it was the same length coming out as it was when it went in.  All good there.  Took my usual vitals and wrote up my discharge papers.  Handed her my TPN pump and bag - everything else will be getting picked up by one of the delivery guys at some point in the future.  She gave me a big hug, wished me luck and said - don't take this the wrong way, but I hope our paths don't cross again.

I keep looking at my arm and can't believe that the line is actually gone.  I kinda have those phantom feelings of the tubing brushing against my skin - get a little shiver now and again.  My arm is a little tender but that is to be expected.  Surprisingly she said that it will probably only take about 48 hours or so for my arm to heal - so I just have to make sure I keep a bandage over it until it fully closes.

I know there are no guarantees that I won't have to return to TPN treatment in the future - but for now I am treasuring every moment that I am picc line free.  I am treasuring being able to do all of the normal daily activities without having to worry about cover up my arm, or carrying my supplies, or whatever.  I can just get up and go if the mood strikes.

It's hard to explain.  I kinda feel vibrant again.  My energy levels are still pretty much shot - I crashed hard this afternoon, I think from all of the excitement and then I went out to the mall and treated myself to an outfit that I will probably wear to my 20 year high school reunion in a few weeks.  I have just been wiped out this evening.  But inside - mentally - I feel 'normal' and vibrant again.  I feel like I can be a girl again.  I feel like I blend in again instead of feeling like people are staring at me.

Now I have to fight.  Fight each day to eat.  Fight through the side effects of eating.  Fight to remain hydrated.  Fight to remain nourished.  If I am able to do this and my body cooperates by accepting and processing what I consume - then I can stave off having to return to TPN treatment.  I have to fight.  Fight to keep my life normal as possible.  

It's a fight and today was a step in the right direction.

Monday, November 7, 2011

How sweet it is...

Wow!  Today just flew by.

Super super busy at work and my work ended up carrying over into my evening as well.  The downfall of the day was having to remember to grab my TPN bag each time I jumped up to do something - especially since I was so focused on my work that there were a few times that I just barely caught myself before yanking my tubing.

I did talk to my dietitian today - briefly.  She asked me about my weight - but I don't weigh myself until Tuesday mornings before seeing my nurse, so I was unable to give her this weeks numbers.  I told her though that I was pretty confident that my weight remained the same or that I gained again.  She asked me what I thought about whether or not I needed to go another week on TPN.  I told her it could go either way - that I am still dealing with all of the side effects when eat, but that everything is staying down.

So we ended the call with her telling me to call her tomorrow after I weigh myself and for me to think about what I want to do tonight.  She actually said since my weight has been "stable" - meaning I haven't been losing weight - that we could just maintain my picc line this week and pull it next week.

Surprisingly though - I didn't jump all over it when she said it.  I think in part it's because I am nervous.  I am nervous if it's going to hurt when they take it out.  But I am more nervous about being able to stay off of TPN and not returning to it.

But I decided tonight that I will have the line pulled next week.  I will maintain the picc line for the week and will hopefully not run into any issues.  Keeping my fingers crossed - BIG TIME!

Would love to not have to carry the bag - to not have tubes coming out of my arm - to be able to take a shower without saran wrap around my arm (well, I won't have to do that after my arm heals) - to not have to decide what I wear based upon whether or not it covers up my arm - to be able to go to my 20 year high school reunion in a couple of weeks and feel 'normal'.  To enjoy the freedom of getting up and going again.  To remove the nightly alarm from my phone that reminds me to take my TPN bag out of the refrigerator for the next day.  Freedom.

I'm ready for it - bring it!

Sunday, November 6, 2011

Scratch today...

Today has not been a good gastroparesis day.

It was nice to sleep in - somewhat - this morning with the changing of the clocks and all.  The dogs for the most part cooperated, but the sunshine coming in through the window didn't help (I have a difficult time staying asleep in the morning with the light in my face - but that doesn't mean that I have a difficult time just staying in bed).

I think I must be having a delayed reaction from last night's dinner - because I didn't eat anything today, however I am having all kinds of symptoms.

I have been in pain all day.  My entire GI system seems to be swelling and pushing up underneath my rib cage and thus pushing on my lungs.  If you've been pregnant - it feels exactly like when you are late in your pregnancy and there is just no room left in there and everything is pushing up into your chest.  It's extremely uncomfortable and frustrating.

My stomach also seems to be distending more and more with each passing hour.  The bottom of my shirt is no longer sitting at my hips like it was this morning.  It is now riding up the middle of my stomach - not an attractive sight at all.  My back is aching from my stomach being so far distended.  I'm nauseous and just getting plain ol' cranky.

These are the times that I have to try to stay strong mentally.  These are the parts that as of right now, I have no solutions for besides dealing with it.  But sometimes dealing with it just plain sucks.  My family is enjoying a fun seafood night for dinner and instead of me eating with them - I am sick from the smell and sitting on the couch just feeling like crap.

It's not much longer before the FDA has their meeting - and it's also not much longer before I go to see the new gastroenterologist.  I am trying not to get my hopes up about the new doctor - because I know the options out there are few and have tried a lot of them.  I am hoping that the FDA works hard to bring new treatments to patients suffering from gastroparesis.  I wonder if they would be more quick to respond if they had a family member who suffered with this condition...I know in reality the answer is probably yes, but I would hope that following this meeting that they will be more informed and want to help us.

Time to go stretch out (as best I can) and give myself some more breathing room...and I think some pain medication is in order as well.  Here's to hoping when I wake up tomorrow that my big belly will be gone.

Wednesday, November 2, 2011

The sunlight is casting my new partner...

This morning started off quite chilly - and of course it is Wednesday, so I had my TPN bag tagging along with me.  It was cold, but the sun was out.

I love when the sun is in my face.  I can close my eyes and all I see is red as the sunlight shines through my eyelids.  Now, I definitely prefer this in the summertime, where the warmth of the sun also dances across my skin - unlike today, where all that danced across my skin was the cold breeze as I rushed from my car into the office this morning.

I had a very busy and productive day - so busy that the time just slipped through my fingers.  I had a brief moment this afternoon, as I walked to get something to eat for lunch, where I could check my personal email.  And yes, I am eating every day.  For the past few weeks, I would say that I actually force myself to eat - since I am not hungry nor do I have a desire to eat.  But I do have a desire to disconnect from this TPN and try to get back to 'normal', even if it ends up being short-lived.  The only way for me to accomplish that goal - is to continue to force myself to eat - and learn to accept the side effects as best as I can.

Anyway, back to my personal email checking.  I had a message from my good friend, with an amazing suggestion - that honestly I am surprised we didn't think of sooner (cause we are smart like, maybe we aren't, lol).  She knows how much I fell in love with my martial arts training and more importantly right now, how much I miss it.  That I am struggling with trying to find something new - that gives me that same feeling that training did - but something my body can handle.  Well, she must have been in my brain - because I have had this 'itch' that when my picc line gets pulled that I wanted to take a beginner kickboxing class...but I know that realistically it is not a good idea.  I am still unable to consume enough calories to go the pace of even the beginner class - it's intense.  But what I can do - and all though it wouldn't be the same as being on the mat - is shadow kickboxing.

I would be able to perfect my technique.  Keep my body moving.  Lose some of this excessive weight that just keeps creeping in on my body every week.  But it would also be good for me mentally.  My training became a very big part of my life - and it's weird to say (or maybe it's not), but it's almost like I am grieving the loss of that part of my life.

So my plan is - starting tomorrow - to get up, stretch, do 15 minutes of shadow boxing and then stretch again.  I will go down into my basement and put on some music and take 30 minutes to myself.  Maybe on the music - as long as it doesn't make me want to punch faster.  For the next week or so - it will just be punches.  Only two punch combinations - something simple and slow.  And then over time I can build onto that - whether it's more punches - dunking and slipping - kicks.

I am excited about trying this.  Only a little nervous of how my body will respond.  I think if anything I might be a little sore just because I have been inactive and unable to do much of anything for so long.  And if I can't go the full 15 minutes tomorrow - then I will go however long my body lets me.  It's all about doing something I love (all though not at the same pace) - it's something that I know - something that my body and my mind both love to do - which means I will be happy doing it.

So for now, the shadow will be my partner.

Tuesday, November 1, 2011

Sometimes plans work and sometimes they don't...

It's been a few days since I have posted, but life has been super busy lately - and nothing has been going according to plan.

Well, I guess I can't say nothing.  I have started my 3x a week on TPN and I have to say I am loving the days not having to carry around my bag.  Even though I have the picc line in - the freedom of just being able to jump up and doing something is so refreshing.  The timing on that couldn't have been more perfect as I had a busy weekend scheduled.

Friday at work are currently working half days - which I LOVE!  It allows me to get out of work at a reasonable time, tend to some errands or just run home and take a nap before my daughter gets done school and I have to take her to the dojo to train.  I was getting ready to head out of the office on Friday when my cell phone rang and the call ended up delaying my departure by about 30 minutes.  I ran home and threw some laundry in the washer and dryer - jumped back on the computer to finish some work - and before I knew it my daughter was home.  I needed to run an errand after she was done training, however my husband called and asked me to come home instead.

Saturday...ah Saturday.  I slept in.  Didn't have to worry about rushing to get up and get ready so that I could be hooked up to my TPN bag early enough that I could disconnect at a reasonable time.  I just can't explain how good that felt.  Arrived at the dojo after driving through the beginnings of the snow storm that rolled into the area.  Shortly after my arrival, Sensei made the decision to close the school and keep the children safe and their parents off the roads.  So it was the mad dash with my partner in crime to call everyone scheduled for classes that day to advise them of the school closing.  A few people didn't get called - but eh, whatcha gonna do.

After leaving the school, all though I dreaded the thought of going, I headed to the grocery store because we had no food in the house (well, actually this was the second stop because I had to pick up a part for my husband's truck - since he was already out plowing the roads).  After over an hour and several hundred dollars later - my daughter and I loaded up the car and headed home with all of the groceries.  Not long after getting home - our power went out.  And stayed out.  More chaos broke loose in the house and in the middle of the night we lost several appliances and electronics due to a power we will just leave it at that and we had a house full of unhappy people.

Sunday morning my daughter and I got up, got dressed and headed to the dojo for the Halloween Party.  Oh and let me not forget - another day of no TPN - Woohoo!  We arrived at the school and were there for several hours - we had a lot of fun - but I was completely exhausted by the time I came home.  I had planned on cooking my family dinner - however my energy levels were completely diminished and they were left to fend for themselves.

After a weekend of non-stop running around - and fortunately without having to carry my TPN bag - I now found myself at Monday and going through the steps of hooking up for the day.  It was kind of depressing - but I did it.  I talked to the dietitian later in the morning and asked her what my next steps would be with my TPN and the picc line.  So it looks like I will remain on 3x a week for definitely this week and probably next week as well.  If everything goes ok, then the following week I will not use any TPN but I will continue to have my picc line.  If that goes ok and I don't have any issues - then they will pull my picc line the following week.  So I am keeping my fingers crossed that this is one plan that we can stick to - because nothing I had planned for the past couple of days really happened the way they were supposed to.

There are definitely times when planning is in order - and most of the times I am someone who likes to know what has to be done or attended to each day - I just feel like I accomplish more if I have a plan in place.  But sometimes it's good to just go with the flow and see what happens.  At the end of the day there isn't much that can be done about a wrench being thrown into a plan - but I can control if I let it affect me or not.  Here's to hoping my TPN and picc line plan stays on track - because I would really, really like to get back to feeling somewhat normal.

Friday, October 28, 2011

Ahhh, the weekend

I am so looking forward to this weekend!

Tomorrow I get to hang out at the dojo and watch a bunch of fun kids train and become better martial artists.

Tomorrow we are expecting snow and hopefully my boys will be out making some money.

Sunday is the Halloween Party at the dojo - where I will get to see a lot of great kids and grown ups dressed up, celebrating and having lots of fun.

Sunday (all though I can't be there because of the Halloween Party) there is a walk taking place at a local park.  I know the organizer of the event and he has so generously offered to give 10% of the proceeds to G-PACT - and he said he is also planning on matching it.  Every time I think about it, it makes me want to cry.  Crying because I know someone so amazing that they are taking raising awareness of gastroparesis to a whole other level for me and patients everywhere.  Extremely grateful.

And to make this weekend all that more amazing...I will be bag free.

This week went well.  I tried every day to stayed down so that's all that matters, I have to learn to live with the other side effects.  Hopeful that this picc line will get pulled in the near future.

Here's to a great weekend - hope everyone else has a great weekend too.

Wednesday, October 26, 2011

Dear FDA...

The FDA (for those reading this outside the US, it stands for the Food and Drug Administration - they are a group responsible for several things, including approving new drugs here in the states) will be holding an Gastrointestinal Advisory Committee Meeting on November 17th.  The meeting will be 9 hours long - which in reality is not a lot of time when you are discussing new treatments or drugs to help a large patient population.  According to G-PACT, this is the first time a meeting of this magnitude is being held in the last 20 years.  Raising awareness doesn't just happen with those around us whom we interact with every day or with the stranger on the street on may approach and ask why you are hooked up to an IV bag - raising awareness also needs to happen in the pharmaceutical industry and with the FDA.

The FDA will be accepting both written and oral statements from the public - an hour of the meeting will be made available for oral presentations from the public (if there are more presentations than time allows, then they will hold a lottery).  While I can't be in Maryland that day to verbally tell the FDA about my experience with Gastroparesis - I can write them a letter.  So here is my current draft letter....

Dear Members of the Gastrointestinal Drugs Advisory Committee,

I want to start off by thanking you for giving the patient population the opportunity to provide personal testimonials about our journey with our gastrointestinal illnesses.  My hope is that after reading and hearing all of our stories, that your awareness of how these conditions affect our daily lives will increase but more importantly that your passion to help find, recommend and approve newer treatment options will be unrelenting.

I am a 38 year old female - who married my high school sweetheart and recently celebrated 20 years with him.  We have two beautiful children - a 17 year old son and a soon to be 12 year old daughter - for whom I live for each day.  I had been training in the martial arts for a couple of years, had quit smoking almost three years ago and just felt like I was in the best shape of my life - really taking care of myself and my body.  Last year however, my life was completely turned upside down - and ultimately my family's as well.

During the summer of 2010, I started to experience severe gastrointestinal issues.  It was a Saturday night and I had eaten dinner with my family after a long busy day.  Almost instantly I began to experience stomach cramps and pain and my abdomen became severely distended and it was difficult to take a deep breath.  Now I had this occur a few times in the past and usually after a few hours I would return to normal, this time that wouldn't be the case.  The distension and the pain would remain for several months and it became increasingly more difficult to eat without further issues.  I soon was under the care of a gastroenterologist at one of our centers of excellence in my home state.

The next few months involved several tests - which would ultimately confirm that I have Gastroparesis, Esophageal Spasms and CIP - but the cause is currently listed as idiopathic.  I have tried a slew of prescription and OTC medications - Reglan, Mestinon, Dexilant, Prilosec, Nexium, Citrucel, Miralax, Probiotics, etc.  All of which were intended to combat one of these gastrointestinal issues that I am dealing with.  Some of them didn't have any effect at all.  Some of them I had adverse effects.  My doctor would perform an endoscopy and inject Botox A into my stomach - I would have some relief for about 6 months before it wore off.  He went in again to repeat the procedure - but my body had built up a tolerance and I didn't respond to the treatment.  A few months later he would try Botox B - but no response.

About a month later I would end up in the hospital for 9 days because I was completely dehydrated and malnourished, because I wasn't able to consume anything without vomiting it back up.  By the time I was admitted to the hospital, I was vomiting blood and bial.  I left the hospital with a picc line, receiving TPN treatment 7 days a week.  That was 2 months ago.  I am still receiving TPN treatment today.  Every day I get up, wash and sterilize my hands, lay out all of my supplies to hook up to my bag for the day (and that is the very abbreviated version of what TPN involves).  Then for 10 hours I carry this bag on my shoulder - which isn't exactly light.

I get up to go to the bathroom - take the bag.
I try to cook my family dinner - take the bag (oh and be careful that the tubing stays away from the hot stove).
Dogs need to go outside - take the bag and be care they don't catch the tubing.
I need to run an errand - take the bag.
Get out to pump gas in the car - take the bag.
At my job I need to pick up what I printed in the copy room - take the bag.
Doing laundry - take the bag.

I am thankful that TPN is keeping me from being hospitalized and instead allows me to be with my family and go to work (something which I struggle with every day, but I am trying to live a 'normal' life so I force myself to go, knowing when my body says 'when' that I have to go home).  But with Gastroparesis I can't live a normal life...

Boss invites me to a lunch meeting - I can't eat, because the menu isn't Gastroparesis friendly and even if it does have something bland, I am usually in too much pain to eat anything.  Nor do I feel comfortable ordering a full blown meal that I will only be able to take a few bites of.
Family is getting together to celebrate - I struggle to be there emotionally, because most celebrations revolve around food and I can't eat like everyone else
My friends want to go out to dinner or out for drinks and dancing - again I can't eat and I don't have the energy to dance

These conditions are life-altering and severely impact a person's quality of life.  I know there are patients which respond to the medications currently available today - however there are so many of us that do not respond or can't take certain medications because of the side effects.

I want to live a normal life.  I don't want my daughter to constantly worry about when mommy is going back in the hospital or worse if I am going to die.  I don't want to hear the worry in my husband's voice or see the concern in my son's eyes, as I lay in a hospital bed.  There are nights I cry myself to sleep because I am terrified of what my future holds, knowing that I have exhausted all of the treatment options my doctor can offer me (he doesn't do the stimulator, nor do I want one based upon the information I have read).  I don't want to shed anymore tears over the patients who have lost their battles to severe cases of these conditions.

I want my life back.
I want my life back.
I want my life back.

Please, make the recommendation for new treatment options - make the recommendation for more funds to be allocated to research (for new treatments and more importantly a cure).

Please help us get our lives back.

Tuesday, October 25, 2011

A step in the right direction...

My plan of attack is working.

Putting that little extra touch on getting ready in the morning is helping to boost my 'self esteem' and starts my morning off with a smile.

Yesterday I made the call to my dietitian.  Told her that I was interested in cutting back to 5 days a week on my TPN, so I could move towards getting disconnected all together and eventually having my picc line removed.  She asked me what I thought about 4 days a week and I was ecstatic.  But I was trying not to get my hopes up because I knew she didn't have the authority to make the decision, that it had to be cleared by my doctor.

So I met with Vanessa this morning - the home nurse that has been seeing me for a while.  She changed my bandaging - there was a good amount of blood this time.  It was weird because I had noticed that there was fresh blood pooling under the bandaging this morning.  When she took off the bandaging it was a little more obvious what was going on - and also helped to explain the pain I was having in my arm on Sunday.

Your body naturally wants to close up a 'wound'.  My body for the past two months has been trying to heal over the tubing that is being used for the picc line.  Last week when Vanessa changed my bandaging I noticed that the skin had grown and extended up the tubing (which honestly I was grossed out by and was praying that I wouldn't be left with a nasty lumpy scar).  Well, this morning we found out that the blood supply had stopped to that extra skin and it was separating from my arm.  I know gross.  So Vanessa cleaned everything up and now I am just dealing with my arm being sore from all of the clean up.

Then as I was heading out of the office for the day, I received a voice mail from my dietitian.  She was calling me back about the doctor's decision.  To say I was nervous would be a tad understated.  But ultimately as I listened to the message, a huge smile came across my face.  The doctor had decided that he would cut me down to 3 days a week.  The dietitian and pharmacist then decided that those 3 days would include lipids in each of the bags - in the event I can't get the proper nutrition during the other 4 days each week.

3 days!  That is 4 days of freedom.  4 days to feel somewhat normal.


Sunday, October 23, 2011

On a mission...

For the past week or so I have been in what I will kindly refer to as a rut.  I am now on a mission - and there are a few things involved in it.

1) Get tapered off of this TPN tube with the plan to lose the picc line all together.  For about the past two weeks, I have diligently been 'forcing' myself to eat a few times a day.  My thought is, if I can continue to put food in my body and it stays down - even if I have every other side effect from eating - that it will help with my 'plea' to my dietitian this week when I ask her to taper down the number of times a week I have to be hooked up.  I don't think I will really have to plea with her, especially since I am making this decision based upon my body's response to food right now.

2) Lose at least 5 pounds.  For whatever reason, my body while on TPN has been packing on the weight each week.  Something which I have really had enough of - and so has my wardrobe.  I am at more than a healthy weight, so me losing some weight is not a bad thing.  I am hopeful that shedding some of these extra pounds will help me not feel so sluggish either.

3) Try each day to put that little extra into getting ready each morning.  Instead of just pulling my hair back into a ponytail - try to get up a little early and do some type of styling to it.  Go back to putting make up on in the morning.  I started the return to make up yesterday and I have to say that 'putting on my face' helped in way with how I felt mentally.  So while my wardrobe isn't cooperating with me right now - I can do my best to make myself feel good by going 'above' what I am doing right now when getting ready.

Now the test will be if I can keep myself focused on what I want to accomplish - and not let this disorder sidetrack me.  I figure if I can, I will be one step closer to reclaiming part of my life.  All of this may sound really easy to do, something which really shouldn't require any effort at all.  The old me would have had no problem knocking these goals out.  The current me is going to have to create energy sources that just simply don't exist - but I'm on a mission.

And there is something to be said about a woman on a mission.

Thursday, October 20, 2011

Coping mechanisms...

Checked out.

I have been checked out lately.  I realize it's not fair to those around me, but it's where I am at right now.  Too much running through my mind right now that needs to be sorted out - so I need to give it the attention it needs before it continues longer than necessary.

I know everyone has more on their plates than they can handle or process in a day - I am not an exception by any means.  But unfortunately I have a habit of pushing things off to the side and then let them reach a point where I have to shut down to deal with it.  I don't know why - but this is what I do.

So emails have been left unopened and unanswered.
Phone calls have not been made.

I have done the necessary things that I have needed to - family and work - but other than not much else.  Tomorrow will be the day that I will either need to snap out of it or I will put on the required face to get through what I gotta get through.

This condition has me by proverbial balls right now and with everything in me I am trying to fight off what is happening.  This disease does not define me.  I need life to get back to where there are other things to talk about.  It seems that when people talk to me, it's the only topic that comes up.  This disease does not define me.  I need my life back.

Wednesday, October 19, 2011

Bad communication vs. Good communication

Communication is a necessity in life - I mean, I guess you could live as a hermit your entire life but then again you would probably talk to yourself and therefore would technically be communicating.

Yesterday, communication went the way I was hoping.  I finally heard back from the assistant to the gastroenterologist that I have been trying to get into see.  Now, I have to wait a few weeks - but I will at least be getting another opinion on my treatment.  I just have to get my medical records sent over to him so he can review my case prior to seeing me.

Now today's communication presented a little bit more of a challenge.  This morning I received a phone call from a nurse at my current gastroenterologist - she was calling to schedule my surgical procedure.  I immediately stopped her and said, No I will not be scheduling this procedure.  I am not getting a j-tube done.  I also shared with her that I am going to be seeing another doctor in a few weeks for a second opinion.

This afternoon my phone rang again.  It was the nurse again.  She was calling to ask how I was feeling.  She then proceeded to inform me that my doctor had made the decision about the j-tube because he misunderstood what was discussed during my appointment and thought that I had one week left of TPN treatment before my insurance cut me off.  He was concerned without some type of tube feeding that I would very quickly end up in the hospital and he wanted to avoid that.  I explained to her that if that was truly his intention that I appreciate that, but that was in no way the way he came across during my visit.

So starting next week hopefully, once I talk to my dietitian, we will start tapering down my TPN - to possibly 5 times a week.  I am really looking forward to having some days where I don't have to hook up to that bag.  That's as long as my body doesn't crash on me.

In the meantime I will get my second opinion and will then have to make the decision - 1) Stay with the doctor who has been treating me for over a year and forgive him for having a bad day of communication or 2) Transition my care over to the new guy if I like him and hope that his communication skills are solid.

Monday, October 17, 2011

Maybe it wasn't such a good idea afterall...or maybe it was

Yesterday I enjoyed the freedom of not lugging around my TPN bag.  There was a part of me that was a little bothered that the bag was going to go to waste - but yesterday I just didn't care.  I was tired of being sick and tired of giving people a reason to look (a.k.a. stare) at me.  My patience with this condition is currently wearing thin.

I want my life back.  I want the life that I had been living for the past few years, the life I was living right before I got sick last year.  When I felt good about the way I looked.  When I was able to train.

I'm angry tonight that I don't have that life.  I know part of my anger stems from the fact that I didn't have such a good day.  My stomach has hurt all day.  I'm tired.  My PICC line site hurts.  My shoulder is still sore.  I still couldn't get through to the new gastroenterologist today to make an appointment.  I'm tired of constantly trying to find clothes to hide my bloated stomach and hide my PICC line.

I tried really hard today to eat a couple of meals - figuring it might make me feel 'normal'.  Had a plain piece of french toast this morning.  Had some soup at lunch.  And had a turkey sandwich this evening.  Bottom line - my stomach handled breakfast this morning and then it was all down hill.  My stomach just grew as the day went on.

Who knows, maybe not hooking up my bag did more 'harm' than good - but honestly, I don't care.  It did good for my mental status.

Sunday, October 16, 2011

I ain't doing it...

Holy lazy Sunday!

The weekends are extremely challenging when it comes to trying to keep my energy levels where they should be.  I wouldn't want to give up anything that I am doing - but it definitely zaps me for everything I have.  Both Friday and Saturday night, I pretty much collapsed when I got home - I didn't fall asleep right away, but my brain was pretty much in lock down mode.

I am still trying to get through to the office of the new gastroenterologist I want to see - but I keep getting the assistant's voice mail.  If I don't get through by Tuesday morning, I am going to him email - he made the decision to publish his email address on the hospital's website, which means I am going to use it if need be.

My shoulder is still bothering me, but I am not exhibiting any of the symptoms that I was told to watch for that would tell them that I am having issues with my PICC line.  Part of me tries to ignore it, but then there is the part of me that knows that my body doesn't always present in the textbook fashion.

I am having a day today where I don't want to deal with gastroparesis.  My TPN bag is still sitting on my table.  Haven't hooked up to it yet.  I don't think I am going to hook up to it.  I slept like garbage last night - finally fell back to sleep this morning around 9am and woke up around noon (and it wasn't just me, the husband and son woke up around the same time and my daughter just now got up - it's 1pm).  But I don't feel like carrying that bag around today.  We are hoping to go to a haunted house thingy tonight - and I don't feel like carrying that bag around.

I'm tired of being sick.  So today I think I am going to be lazy, but I am going to be lazy without a bag hanging on my arm.  Ok, I probably won't be completely lazy - there is laundry that needs to be done and stuff like that - but I don't want to have a bag with me.  Now this is obviously a choice that I cannot make everyday - but I don't think one day will hurt.

Ok - time to go be lazy and try to knock this funk outta my mind so that I am back on track tomorrow.

Thursday, October 13, 2011

A potential option...

Why does getting an appointment to see the "good" doctors have to be so challenging?  I know the answer to the question, it's just frustrating I guess.  I am still trying to get through to the new guy's assistant to make an appointment.  Not so surprisingly - I still haven't heard anything back from my current gastroenterologist.  He was supposedly going to call me to schedule the j-tube.  Definitely not rushing that phone call.

Tonight's internet research focused on Domperidone.  Every time I have gone in for an appointment and the current treatment option doesn't work - my doctor would always ask me if I had ever taken Domperidone before.  My response has always been the same - No.  To which he has never had a response - never asked any further questions or suggested that I try taking it.

The concept of Domperidone is that it helps move food through your digestive tract.  There's a catch.  It hasn't been FDA approved for use in the United States yet.  Which means I can't just get a prescription and take it to my local pharmacy.  I would have to order it on the internet from some place like Canada.

I am not really sure how I feel about taking a medication that isn't approved here in the States.  I have been trying to see what information I can find online - a lot of which so far has been individual patient experiences.  As with anything, I am finding a mix of information.  Still not really sure what I think just yet.

The dietitian that I speak to every week, had actually suggested yesterday calling my gastroenterologist up and telling him I wanted more information about Domperidone, dosing, how to obtain it, etc.  She thought I should give it a try, as she is aware of some gastroparesis patients who have had some relief with it.  Problem is, I really don't feel like calling him and at this point I also don't know that I trust his judgement on anything.  Instead I think I will add to my list of things to discuss with the new doctor - whenever I get in to see him.

I also 'caved' tonight and ate something I shouldn't have.  And while I am already paying for it - it was yummy at the time.  The family hasn't had pizza in quite some time, so tonight I ordered them a pizza with extra cheese and pepperoni.  I cut a slice in half, so it was more like a sliver.  After the second bite I already felt full, but I was insistent that if it was going to make me uncomfortable and sick - that I was going to eat that whole darn sliver of pizza.  And I did.  And it was yummy.  And my big round belly is in effect.

Domperidone = Uncertainty
Pizza = Yumminess
Yumminess = Big Belly

Wednesday, October 12, 2011

Today needed to be better...and to some extent it was

Yesterday just plain sucked.  Excuse my french.

I had a horrible night of sleep - something which did not surprise me, because there was just way too much on mind after the abomination of an appointment that I had with my gastroenterologist.  My mind was left to wander because of the way that my doctor had handled the appointment.  I didn't have answers and so I was left to fend for myself and see what I could find on the internet.  Not a very good doctor.

So this morning I put in a phone call to a new specialist - at a different hospital down in the city - a highly qualified physician who specializes in this condition.  He is the Chair of his department and holds several other high level positions.  Which means I will probably have a hard time getting into see him - if he is even accepting new patients.  Fingers crossed.  And perhaps I will see if some of my connections can pull a few strings - or maybe I will get lucky and he will have a cancellation.

I spoke with my dietitian as well today.  She said my lab work this week looked good.  She is still working on getting the doctor to approve decreasing my lipid intake to just once per week due to the substantial weight gain that I have been experiencing.  She said that she had contacted him again and I explained to her what happened at my appointment yesterday.  She was livid and said that it was completely unacceptable that he spoke to me that way and made me feel the way that he did.  She also shared with me, that while it wouldn't make me feel any better, that this wasn't the first time that she had spoken to a patient that had a complaint about him.  It just infuriated me more than I already was about the situation.  Jackwagon.

And this afternoon I received a follow up call from the case worker at my insurance company.  She was calling to follow up to see how my appointment went.  I simply explained to her that I am in the process of securing an appointment with another gastroenterologist for a second opinion.  I really didn't feel like getting into it with her.  She asked if there was anything that I needed from her.  I said - Yes, I need you to figure out what is going on with my insurance coverage since the clock is ticking on me getting to the 60 day mark with my TPN.  I had been told that it was only covered for 60 days, so I need to know what I am going to do if I don't have coverage and need to have the PICC line removed.

She ended up calling me back and informed me that the woman who had previously advised of my coverage was wrong.  My TPN is covered fully.  My coverage also includes a total of 60 home nurse visits.  So basically that is covered completed as well since I only see the nurse once a week and there are only 52 weeks in the year.  HUGE weight lifted off of my shoulders following that conversation.  I actually made her repeat the information a few times - asked several questions for clarification - just to make sure that I was hearing her correctly.  I was.

It's difficult enough dealing with this condition without all of the added stress.  So while I didn't have a stellar day symptom-wise and I struggled to get the eggs down this morning and my stomach looks and feels like I swallowed a watermelon and none of my clothes want to fit right now - I am going to sleep much better tonight knowing that I no longer need to stress over whether or not my insurance is going to cover what I need.

Today was a better day.

Tuesday, October 11, 2011


One thing is certain - I am seeking a new physician for at a minimum another opinion but most likely to be my new gastroenterologist.

My appointment definitely did not leave me feeling the way it should have.  In fact it was the second time in the last month that this doctor made me cry.  Oh, and he has only seen me twice in the past month.  It takes a lot for someone to make me cry - especially when it is someone that I am not personally vested in.

I had spoken to the nurse that was going to meet me after my appointment about the pain I was having in my shoulder the past few days - and could it be a sign that there is something wrong with my PICC line.  He suggested that I mention it to the doctor when he saw me, in case he wanted to send me over for an ultrasound of my arm to make sure everything was ok.  My doctor wanted nothing to do with it.  Told me there was nothing wrong with my PICC line and to let them continue to use it.

The doctor's assistant called me back.  First things first - get my weight.  I have gained 12 pounds in the past month.  12 FRIGGIN POUNDS!  How is that even possible?  I am maybe, MAYBE, eating one meal a day.  Usually something like eggs or toast or yogurt.  They have also decreased how many bags each week contain lipids (fats) from 7 down to 2.  And I continue to gain weight.

So I went into the room and waited for the doctor.  He walked in and asked me how I was doing.  I told him that I was the same, with the exception that I wasn't dehydrated or malnourished due to the TPN.  That I was still struggling with being able to eat anything - that my stomach is still not tolerating me eating.  I am in pain all of the time - the distension - everything the same.  Then it happened - he made me cry.

He proceeded to lecture me.  You have to eat.  This is ridiculous - you have to eat.  You have to force yourself to eat.  If you can't do that then you should be able to just do liquids.  Liquids will go right through and not give you any problems.  What do you think that you can be on TPN forever?  You just have to eat.

I was floored.  Here is a doctor who is supposed to understand gastroparesis.  Here is a doctor that he is supposedly an expert in dealing with gastroparesis patients.  I started to cry.  And then I started to lecture him back.

Do you think I don't want to eat?  Do you think that I don't try everyday to force myself to eat?  And no - your theory on the liquids isn't necessarily true - because I can only consume so much before my stomach is full due to the stomach acids.  Do you think I enjoy being on TPN?  No, I don't - but that's what I have to do to keep myself out of the hospital.

So he started to examine me.  Asked me if I was taking pain medication and that I really shouldn't because it slows down your GI system.  Guess what - I know that - but guess what - I also need something to alleviate the pain enough that I can function in life.  He asks me if I have been back to work.  Yes, I have been back to work - I try every day to go to work and live a normal life.

So then he makes the following statement - well you can't be on that TPN forever, so we need to do a percutaneous jejunostomy. 

In a nutshell - a j-tube - a feeding tube.  But he didn't bother explaining anything else to me.  Just told the nurse to get me to the check out and then put my file back on his desk.  He was going to call someone and then call me back.

So here I am completely left to let my mind wander and not have any answers to the fifty million questions that are now running through my head.

- Can you eat when you have a j-tube?
- Is a j-tube permanent?
- What are the complications associated with a j-tube?
- Would it be a regular j-tube or a button?
- How long would my daily feedings be?
- Are the feedings like my TPN where I would carry it around, or do I have to run it while at home?
- Are j-tube feedings considered to be home infusion?

I am just completed shocked that my appointment went the way it did.  I am discouraged that this is someone that should have a better bedside manner.

I am sorry that I am not your textbook patient.  I am sorry that my body doesn't respond to the medications you prescribe.  I am sorry that my body built up a tolerance to the Botox and that is no longer a viable option.  I am sorry that you are out of options to treat my symptoms and that you are now left to simply ensure that I am receiving my nutrition.

Wait...why am I apologizing to you?  Today was completely unacceptable - and I am not going to accept it.  I sent a message to a co-worker, someone who works with world-renowned gastroenterologists.  I gave him all my information.  He is now working on finding me a new doctor.  I need a new doctor to oversee my care.  But more importantly I need a new doctor right now to evaluate if I in fact need to have a j-tube placed.

If I do - that's ok.  Like my TPN, it would ensure that I was receiving the proper nutrition every day - allow me to remain involved in my daily life activities - keep me out of the hospital.  But if it's not time yet, then I don't want to rush it.

It's going to be hard to shut my brain off tonight - too much information from today to process.  Too much information and a lot of disappointment.