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.