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.

Monday, October 10, 2011

Nerves of steel...I don't think so

I should be sleeping - but obviously I am not.  I need to get up early tomorrow to drive into the city for my follow appointment with my gastroenterologist.

I am more than a little nervous.  This will be the first time I see him since I was in the hospital at the beginning of September.  At this point there really haven't been any real improvements.  My weight for the most part has been good - even though I've put on a few pounds from the lipids in my TPN treatment, it's better than losing weight at this point I guess.  But I am still struggling each day when I eat - no matter what I eat.

I'll have to tell him that I stopped taking the Mestinon and why.  It's not like he will yell or lecture me or anything - it's just that he doesn't know yet and I know it's going to add to his 'frustration' that my body isn't responding to anything he gives me.  He's also going to need to prescribe me something different than Nexium - because I can't afford $100 a month for a single script.

I am nervous that he is going to pull the PICC line - even though my stomach isn't ready for that step.  I am not sure why that is stuck in my head, but for some reason it is.  I just keep hearing him say that he could remove it in the office - something he said while I was in the hospital.  Realistically though there is a possibility that I may have to have it removed tomorrow for other reasons.

For the past few days I have been having discomfort in my shoulder and yesterday I could feel it a little in my chest.  I am not sure if that is a sign that the PICC line is failing (or has an issue).  So I will discuss it with the Home Nurse tomorrow - whom I am actually seeing down in the city after my gastroenterologist appointment.  Who knows - it could just be that I cranked my shoulder or something from lugging that bag around.

I am also at that point in my treatment where I may need to start looking for another doctor - but that is going to be based upon how I feel after tomorrow's appointment.  It's not that I need to change doctor's because mine is not exploring other treatment options.  There are no other treatment options.  I have tried them all - with the exception of the stomach pacemaker which I refuse to do.  The change may need to be made based upon whether or not he is the right doctor to continue to manage my nutrition while we are waiting for other treatment options to become available.

I am sure it is frustrating as a physician to have your bag of tricks be empty.  To have exhausted all of the options available to you to treat your patients symptoms when their condition currently has no cure.  I get that.  Cause trust me - it's frustrating as a patient to be in that position.  It's frustrating to know that my body doesn't respond to treatments the way most people would - that I typically am one of those people that will have the adverse reactions to medications - it's just the way my body operates.  And its not that I fault my doctor that there is nothing else that he can do for me - I know he is trying.  So at this point - it's what are we doing to supplement my nutrition.

The clock is also ticking on the 60 days that my insurance will cover my TPN treatment - we are at the half way mark.  Just something else which is constantly running through my head.  What are we going to do in 30 days?  I keep trying to tell myself we will cross that bridge when we get there.  Ideally I would love a miracle for my stomach to start working again and then I wouldn't have to worry about any of this - how nice would that be.

And I am hoping that this appointment is at least a productive one - unlike my rheumatologist appointment last week that left me very frustrated.  I really don't want to feel that way tomorrow.

Time to quiet down the thoughts in my head.
To close my eyes as I sink down into my pillow.
To slowly take a breath in and very slowly let it out.
Relaxing every muscle in my body.
To clear my mind of all thoughts.
To prepare myself for pleasant dreams.

Cause you know damn well that 5:30am alarm is gonna be here before I know it :)

Sunday, October 9, 2011



Yesterday was our annual Pig Party.  Now it's not like we have the party the same time each year - it's kind of when the mood strikes (usually in the summer) - the guys all get together at our house for a day of fun.  This year's event happened much later in the season, but we couldn't have asked for a better day - the weather was perfect.  The past few weeks have been filled with lots of rain and yesterday was beautiful, sunny and warm.

If you don't know what a pig party is - it is basically a pig roast.  In the years past, we would order a pig that had already been cooked - but this year the guys decided they wanted to do it themselves.  We had two large cookers going - one holding a 200lb pig and the other holding two smaller pigs, each probably less than 50lbs.  So the guys had to do everything from killing them, de-hairing them, gutting them, etc. - something which I am glad I was not a part of on Friday and that it all took place when I was not around.

Yesterday morning I woke up around 6:30am - went outside and checked on the cookers and they had both gone out overnight.  So I went in - woke up my husband and told him he need to get up and get them started again.  The day started from there - next was setting up the laser tag moon bounce that we had rented.  My husband and I were both not pleased with the game for the kids (especially given the cost of it) - so we woke up our daughter and made her come outside and check it out.  She walked out and said "This sucks".  We couldn't agree more - so off I went back to the rental place to exchange it for a large moon bounce that the kids would definitely enjoy.

Then the race was on - get showered, get hooked up to my TPN bag, start cooking and setting up before people arrived.  By this time - my energy was already gone and I was spent.  But I pushed through.  Got out of the shower and took some pain medicine - looked at the clock and realized it was almost 12:00 - which meant I wouldn't be able to disconnect from my TPN bag until 10:00pm.  It was going to be a LONG day.  About an hour later our friends started showing up and I was in the kitchen cooking until after 3:00pm.

I finished cooking and then it was time to sit down and hang out with our friends.  I watched as the kids were running around - most of them not leaving the moon bounce until their parents said it was time to go home.  Talked with a lot of people.  But to say I was exhausted was an understatement.

Most years, we are recuperating the following day from a very late night full of several adult beverages and full bellies from great food.  Well, that is everyone elses recuperation today - mine is a little different.

I didn't get to enjoy any adult beverages.
I didn't get to eat any of the roasted pig - which I heard was amazing.  My daughter was standing in front me eating it and I could smell the smokiness on her as she talked to me with the food in her mouth.
I didn't get to eat any of my potato salad or macaroni salad.
I didn't get to eat any of the yummy desserts that our friends made.
I didn't get to eat any of the buffalo chicken dip.

I did get to hang out with friends.
I did get to laugh.
I did get to smile at the kids.

Everyone headed out - the husband was in bed already - his friend sleeping downstairs.  I cleaned up some, mainly getting everything that needed to get into the fridge taken care of.  This morning we finished up - dishes, cans/cups disposed of, chairs and tables stored away, etc.  My body is still trying to gain back its strength - fortunately I am working from home the next two days which is definitely going to help.

One thing I did learn - sometimes wearing myself out is worth the happiness experienced.

Thursday, October 6, 2011

Could camping make it all better?

I should have known after the night I had - that my day was not going to be any better.  It started with a dream about my brother.  We were all at a water park going down a water slide.  Everyone gets to the bottom and I turn to look for my brother waiting for him - but he isn't coming.  Suddenly there is a commotion on the walkway bridge above the slide and I see several men with their arms laced under this man who is non-responsive.  It is my brother.  By the time I raced up the stairs, they had him laying on the ground in this room.  Just as I pushed my way through the crowd to make my way over to him - I woke up.  It took me quite awhile before I could fall back to sleep.

When I did finally get up this morning - I was exhausted.  All though I don't remember my other dreams right now - I know it was a very stressful night of sleep (or rather lack of).  I started my TPN bag later than I wanted to - but I also knew I was going to have a long day so it wasn't necessarily a bad thing either.  Got my daughter off to school and worked for a few hours before getting ready to head out for my appointment with my rheumatologist.

The ride to the city was stressful.  I actually think I was in a fog for most of the ride, because now that I think about it I don't really remember the ride.  And go figure - the day that I give myself almost two hours to get down there (cause I was driving during the lunch rush hour) - I make it there in 30 minutes.

Now some people reading this remember my parking garage catastrophe from last year when I went to see my rheumatologist - so I always laugh and pray that I don't have a repeat.  Basically I left an appointment last year very upset and should have calmed myself first before driving but I didn't.  It had been my first visit with her and also my first time in the parking garage - not realizing that I had to go into another building to pay for the ticket before leaving.  Well, I went to leave the garage - had to put my car in reverse to go back and pay - and took out the ticket reading machine.  So as I parked my car today and noticed that I was again on the 5th floor - I was a little concerned over how the day was going to play out.  Oh - and to top things off, there was a sign hanging on the elevator doors warning the parking garage customers about an increase in break ins and thefts to cars in their garage...WONDERFUL!

So onto my appointment.  I was taken back about 30 minutes after my actual appointment time - which really didn't phase me, because this doctor is usually very thorough and spends the time needed with her patients - something which I admired about her when I first met her.  So now it's my turn - or so I thought.

I got into the room, took off my sweatshirt so that she could take my blood pressure and stuff.  She noticed my picc line - and said "What's this?  I thought maybe you just an earphone line running to your backpack."  The rest of the visit felt like she was fixated on my picc line and the gastroparesis versus what I was there to see her for.  She reviewed my lab work which had been done during my hospital visit and just kept shaking her head.  I mentioned to her about the comments made by two of the doctors that saw me in the hospital and them thinking I have CREST.

Her response was not what I expected.  Now I will preface this with this fact - I DON'T want to hear that I have CREST - but it is hard to not worry about that diagnosis when I have several of the markers.  So she responds with - "Those doctors don't know what they are talking about.  The term CREST isn't even utilized anymore because the majority of patients never have all five markers.  The correct term, which we have used for the last two years, is limited scleroderma.  And besides, those doctors shouldn't be making those diagnoses anyway.  And even if you do have it - there is nothing that can be done for you to make it go away.  It's not like I can open up this cabinet and be like - Oh, here is this medicine to make you better and we will ship the rest of it to your house."

At this point - my jaw is on the floor.  I could feel myself start to go into shut down mode - which is what I do with a doctor when they start to make me feel like an ass or are not listening to what I am saying.  But I continued to share with her the rest of the information that I felt she needed to know during this visit.

She asked how my Raynaud's was doing.  (If you don't know - Raynaud's is a circulatory disease which causes symptoms primarily in the hands and feet - and is more common in women.  People can have Raynaud's by itself or can have it conjunction with another condition - something my parents were told to watch for when I was diagnosed as a teenager).  So I told her about the problems I have been having - especially on my right side.  That when I have an attack, my entire right arm will get ice cold - cold to the bone to the point I can't get it to warm back up very easily - and that sometimes the coldness comes across into my chest.  She was puzzled.

She asked if there have been any other changes in my skin.  I explained to her and showed her the small bumps which are now present around my elbows.  I told her that they have been there for a few months now and don't seem to be going away.  She confirmed that she could feel them - but said nothing.

And when she asked about any chest issues - I shared with her the fact that for almost the past two weeks that I have been experiencing getting winded very easily.  Walking from car into work - I'm trying to catch my breath.  Up and down the stairs - winded.  No stamina - just wiped out.

So she typed away on her computer for a few minutes.  Wrote me out a script to have an ultrasound done on my right arm (she wants to make sure that something isn't being missed that could be interfering with the blood flow in my arm).  Then she looked at me and said - "So what do you say we meet again in six months?".  Like it was my choice.  If you don't need to see me every two months, like most specialists do, then just say you want to see me in six months - don't give it to me as an option.

To say I left frustrated and confused would be an understatement.  I felt like I had just seen a doctor that wasn't the same person I had previously been seen by.  She never came out and said you don't have CREST (or limited scleroderma) but she didn't say I did either - just that she wouldn't be able to cure me.  Kind of something I would like to know - since I already have a form of scleroderma.  I honestly don't know what to think at this point.

What it did do - was confirm the bad feeling I had already had.  I usually have pretty good instincts on certain things and last week I was walking around with the feeling that I was going to hit a wall with my current medical team.  Something which worries me more about my next appointment on Tuesday with the gastroenterologist.  I am worried that he has hit his limits of how he can care for me, I am worried that he is going to pull my picc line too soon when my stomach is still not functioning the way it needs to for me to be able to eat.

Trying to keep myself from going into doctor shut down mode - cause it's not something I can really do.  Trying not to go into emotional shut down mode - cause I can't really do that either.   Hoping that this weekend's activities free my mind for a while - without wearing out my body.

I need a happy day - a runaway camping day.

Tuesday, October 4, 2011

Check, check and uncheck...

Lack of energy - check.
Stomach cramps - check.
Nausea - check.
Sore throat from heartburn - check.
Freezing hands and feet - check.
Trying to remain positive and strong-minded - check.

Some days are better than others - but who doesn't have a bad day.  It's when you have several bad days in a row that it starts to become more challenging staying mentally strong.  Add onto that a complete lack of energy and all I want to do is stay in my pajamas and curl up under my blanket.

But I can't do that.  I have a job that I need to show up at.  A husband that needs his wife.  Children that need their mom.  Parents that need me to be a daughter.  A brother who needs me to be his sister.  Friends that need me to...well, be a friend.

It's a battle I have to have with myself every day.  My body is telling me that I need to rest - and some days I listen.  Unfortunately it's trying to tell me every day that I need to rest - and I just can't do that at this point.

There is something to be said about QOL - quality of life.  People naturally want to be happy - want to enjoy activities in life - what to have fun with their loved ones - want to be able to get up and go when the mood strikes.  So what happens when you don't have those things?  What happens when something is affecting you from being able to get out and do the things that you once loved?  What happens when you have a plan in your head of accomplishing certain tasks and then when the time comes, you can't do them because you are running on fumes?

It messes with your head - that's what happens.  One could very easily slip into a depression.  Depression is actually very common in people who suffer from a disease or disorder - especially when there is no cure or "on the outside they look fine".

I am finding that I have been able to avoid the depression at this point - because I am trying to keep my life as normal as possible (ie., not staying in my pajamas everyday like I want to) and surrounding myself with a great support system through family and friends.  I am not however immune to the possibility of becoming depressed.  It will be how I handle it if the day should come.

For now, I will continue as I am - and will continue to find something positive each day.

Monday, October 3, 2011

She shoots......she scores!

Setting goals.

I think all of us at some point in our lives have set a goal - whether it was a short term goal or even a long term goal.  The feeling you get from achieving those goals - can be amazing.  I think setting goals when you are dealing with an illness - is all that more critical.  Special events that you can focus your energy on, which in turn might keep you from constantly thinking about being sick.  Basically, a distraction.

This past summer, my goal was to get to my friend's wedding and take the pictures for her wedding.  I made it to the wedding and did my best at the time on the pictures.  It was muggy as hell that day which was definitely affecting how I was feeling.  But I made the trip - something which I wasn't always sure I was going to be able to do.

I think I might have my next goal in mind.  My cousin is getting married at the end of February in Charlotte.  I really want to go.  I originally was planning on just going by myself for the weekend - but I really want my family to be there too.  The hard part was that my daughter isn't allowed to come to the reception because she is below the age cut off.  I was struggling with going to an event that she couldn't be there with us.

So tonight I get a call from one of my other cousins - who is more like an older brother to me.  We both catch up on how the other is feeling - talk a bit about work and the family.  And then we shifted gears and talked about going to the wedding.  After talking to him, I want to go more than I did already.  He had talked to my brother as well - and the plan is to stay an extra day.  This way we can hang out at the hotel together - catch up - let the kids all swim in the pool - just have some more time together.

So I think that is my goal.  To go to Charlotte in February for the weekend.  See my cousin get married.  Spend the weekend with my cousins.  I definitely want to fly - the drive would be way too long - but I would have to get clearance for my husband to fly (his lung collapsed earlier this year).  If he can't fly, I'm not sure what we will do.  But we've got time to figure it out I guess.

"Long" term goal set.  "Short" term goal accomplished too - get distracted from the fatigue and pain that I have had all day (thanks to my cousin for a great phone call and lots of laughs mixed in with all of the serious conversations)!

Sunday, October 2, 2011

Running on vapors

Trying to find an energy source.

These last couple of days have been long and very draining on what little energy I have.

Thursday night was tiring, but brought a smile to my face.  It had been the first time in over a month that I had been in the kitchen.  I went to the store and picked up some needed ingredients and prepared a salmon with a spicy sauce, rice, white asparagus and sauteed peppers.  My family loved the meal - which just made my night.  Two observations though - cooking and having my TPN bag on my shoulder is not the easiest thing to do - and one must use caution not to let the TPN tubing come in contact with the hot stove.  My tubing didn't touch the stove - almost - so I was constantly checking.

Friday and Saturday were pretty much the same.  Nauseous, tired and in pain - and lots of heartburn.  But I had things that needed to be done, so I did the best to complete them and do them with a smile.

Today was about the same.  Laid around for a while before I finally hooked up to my TPN - plus I had to wait for my husband to wake up so he could help me change my extensions.  Started to do some cleaning around the house - and I was exhausted.  So I laid back down for a bit.  Then I mustered up some energy and went to do a little grocery shopping.  Ran into a couple of little cuties while I was there - we took turns stalking each other from aisle to aisle.  I picked up what I needed to make up some chili - some other basic grocery items - and also ingredients to make a sausage/chicken/shrimp gumbo later this week.

I cooked and here I find myself out of energy and back on the couch.

I am struggling with just trying to get through everyday life activities.  The TPN is giving me what I need from a nutritional standpoint - but it just doesn't equate to energy.  Hopefully my energy will start to return and when I see my doctor next week, it will be one of the things that we discuss.

Ok.  Back to resting.