Friday, October 28, 2011

A New Chapter?

Although I would rather not think about any of this right now, I'd like to update you all on our most recent findings. 

This week was the conclusion of the testing my GI had set up to determine what was going on with me digestively.  Let me just say, the preparation for many of these tests is near torture so I am so glad they are over.  I suppose if this is an open forum and I am trying to connect with others who may be dealing with similar issues I need to be honest and open as well.  I had a small bowel follow through, a hida scan, an abdominal ultra sound, blood work, stool samples, a colonoscopy, and an upper endoscopy.  All of which, except the stool sample and blood work, required fasting of some sort.  Some required additional preparation, non of which was enjoyable.  When you are suffering, you are willing to do nearly anything to relieve the pain.  That's what I did.

At this point, there was no evidence of Ulcerative Colitis or Crohn's disease.  That was our biggest fear and the doctors initial thought.  The biopsies are still out so we will know for sure once we get them back.  That is a relief.  What they did find was my immune system attacking (surprise, surprise) the parietal cells of my stomach.  Leaving my stomach a beautiful disaster.

Parietal cells secrete gastric acid and intrinsic factor.  Intrinsic factor deals directly with the absorption of vitamin B12.  The inability to absorb B12 is called pernicious anemia.  The treatment is usually B12 supplements taken sublingually or by injection.  Gastric acid is a digestive fluid.  Gastric acid plays a key role in the breakdown and digestion of proteins, by activating digestive enzymes.  Together the enzymes and acids unravel the long chains of amino acids found in proteins. 

The doctor immediately checked my B12 levels, but I have been on B12 injections for a few months now based on a blood test that showed antibodies against these parietal cells.  I suspect the levels should be normal and I will continue the injections.  As for the gastric acid, we were told there is no replacing it.  My stomach did show a lot of damage so I was placed on a medication to heal it.  I understand this medication is normally used to treat stomach ulcers.

I was told at the conclusion of the final scope that a referral was going to be sent to an immunologist.  At this stage of the game, the goal is to stop the immune system from attacking healthy organ systems and continue fighting foreign invaders.  In a few weeks I will have follow up appointments and get the final results of all the tests.  The GI doctor seemed positive and said, "We're on the right track."

I have mixed emotions about this all.  I assume anyone would.  On one hand, I am happy that they actually found the source of this unyielding pain.  I am glad there is some validation.  At some point, you start to feel crazy feeling so sick with no answers.  I am also glad to be heading in the right direction to having the full picture of my health.  On the other hand, I am overwhelmed and frightened.  I was looking forward to some relief from the pain and discomfort.  I knew that would be unlikely if it turned out to be UC or Crohn's so when I heard the intestines looked good I was excited.  To know that there is no way to replace the gastric acid is rough because I know the lack of digestion is causing the pain.  Bundle that along with the lack of absorption of key nutrients leads to feeling pretty run down quite often.  I am frightened by what the immunologist may find.  I realize I should compartmentalize.  Looking at this as a whole is too overwhelming.  But human nature....well, I'll say my nature, is to plan and prepare...and worry I guess.  My way of dealing with this is to lay it all out, even the "unimportant" factors, and then compartmentalizing and move on.  That's what I'll do here.

I have been so self conscious about my physical appearance.  Let's face it, what woman isn't.  I feel very vain and superficial for feeling this way, but I will not deny it.  I have acne.  I hate it.  I learned that this is a symptom of the antibodies attacking the parietal cells.  Now, I know it will not clear up so I will have to learn to deal with a teenagers face in adulthood.  I have also had a very straight framed body.  With the most recent weight loss, I feel like a little boy.  That ultra thin hungry look is not what I go for.  Add that to the fact that I cannot wear clothing that is too tight or restricting on the abdominal area because it just puts too much pressure there, makes me feel sloppy.  I am in definite need of a fashionista to find some comfy, but flattering clothes.  That's enough vanity for today.

Now moving on to the physical aspects.  I am overwhelmed and frightened by the fact that they can continue to "band-aid" the pain, but it will never be resolved.  I am learning to eat slowly and chew very well.  I am so limited, at this point, as to how much and what I can ingest.  Many woman would be happy to be worrying about being too thin or being forced to eat less and be conscious about what is in your mouth, but it is not something that I enjoy at all.  Our culture and society is inundated with food.  Social gatherings, holidays, dates, movies, etc all involve food.  It is an integral part of our lives.  To me it is nothing but the enemy.  I was hoping this would not be the case for the duration, but the harsh reality is, it will be.  Rough road to be looking down.

So, I take all of this.  The good, the bad, and the ugly.  The truths, the uncertainties, and the predictions.  Gather them all in a pile.  I will take it and put it at the back of my mind.  When something needs to be accessed, it'll be there.  In the meantime, I wait.  I focus on my family.  I focus on my gorgeous son, who, by the way, turned 6 yesterday.  I take his smiling face and incredible heart and mind and I run with it.  Soak it up.  Keep my eye on the prize and leave the rest to God.  The burden is too big to carry so I imagine lifting it off of my shoulders and throwing it to Him.  I imagine my own father, who passed from complications of Type I diabetes nearly 24 years ago, looking down on me.  I feel him smiling down on me and guiding me.  I long to hear his voice.  I would love to ask for advice.  I know he is listening.  I know he is talking to me.  I just look for the signs.  I embrace my parents love and support.  I appreciate the warmth of my sister who lets me lose it whenever I feel the need.  I admire my husband for his strength and unyielding love throughout this all.  And I remember, no one is put on this earth to suffer.  It only enhances the good in life.

Saturday, October 22, 2011

Family Support

Please check out this blog.  It is written by my brother-in-law who happens to be a jack of all trades.  Not only am I proud of his support, but I am proud of the work he has on his blog.  Check him out!
http://someaudioguy.blogspot.com/2011/10/my-photography-and-helping-cause.html

The ins n outs

I am writing this today in anticipation of Monday's procedures.  I am finally being scoped to find answers to my weight loss, lack of digestion, pain, and other unmentionables.  I have been waiting years for relief.  The last several weeks has been full of tests and scans.  I am completely exhausted, but that light at the end of the tunnel keeps me pushing forward.....along with that amazing smile on my son's face!

Last Saturday my GI doc called and told me that I tested positive for an infection called Clostridium Difficile also known as C Diff.  He put me on an antibacterial medication and instructed to start it immediately, and to report back to him on Wednesday.  I had no idea what this was so I looked it up.  As far as I understand it is a bacteria in the colon.  A lot of people are exposed to this or have it in their body, but their immune systems can take care of it.  Apparently, if you have been on antibiotics for a long period of time they can diminish the good bacteria allowing the C Diff to take over.  I have not been on antibiotics recently.  Another risk factor is if you live in a long term care facility or have been in the hospital for more than 2 weeks.  Again, not a part of my life recently.  And finally, the last risk factor is AIDS/HIV or a suppressed immune system.  I trust it is the latter. 

The day before that phone call I had an ultrasound.  It was check on my internal organs, the ducts, their functioning, and blood flow.  The woman who did the US was great.  She was so warm, friendly, and compassionate.  It is people like her that remind me how good the world really is.  She found some calcifications on my gallbladder.  At this moment in time, to my knowledge, no doctor has reviewed that report.  I believe it will need to be removed by the way she described it, but that is another waiting game.

I have been running myself ragged trying to get things in order at home.  I usually know when things are going to get difficult and try to plan accordingly.  Although, Monday's procedures are routine and outpatient, I have no idea what they will see.  My primary doctor has been out of town all week so I assume when she returns she will see the US report as well as the tests results and make a determination on what steps to take next.  Fortunately or unfortunately because I have been in this position before for other diseases or organ systems, I know the next few weeks if not months will take a lot out of me.  My husband works full time so I try to make sure there are only necessities to take care of while I am out of commission.  Make his life as easy as possible.

Tonight, we are planning on attending a Halloween party.  This should be exciting and fun.  I have not gone out for fun in over a month.  I rarely see many of my friends and the majority of them will be at this party.  My son's aunt will spend time with him so my husband and I can have a night off.  I should be anxiously awaiting the fun......instead I am anxiously awaiting how I will feel.  My stomach is not so great today.  I feel a lot of pressure under my ribs and tenderness throughout my abdomen.  I have no appetite and a horrible taste in my mouth (probably from the antibacterial).  I am nervous about dressing up because woman's costumes are generally pretty skimpy.  Even though I am tiny, I am very self conscious because of my gut issues.  I also get cold very easily and it tends to make me ache.  I think I covered my bases by buying some clothes to layer, but hopefully keep the costume cute.  I hope I can push this all aside for a few hours and enjoy myself.  I just need some rest.  Wish me luck.

Wednesday, October 12, 2011

Moments of Weakness

The month of October has hit me like a ton of bricks.  I knew the 5 weeks following my first gastroenterologist appointment would be difficult, but I never imagined it would be this hard.  For the past several months these digestive issues have only worsened.  They are at a point where they affect every aspect of my day every day.  There was about 6 or 7 days at the end of September that I was blessed with some relief, but the fear was never far behind.  Testing will be done (hopefully) by the end of October so I was prepared for no relief until thereafter. 

In recent posts I have talked about my primary care doctor showing more signs of concern.  She is a bulldog, and I love that about her.  She does not want to leave any stone unturned.  In addition to the 4 tests the GI set up for me, my primary added a few additional scans.  At first thought, I was pleased.  There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms.  That usually only created a more devastating realization later.  So, I am glad my current primary is more thorough.

To put this in perspective for you I will give you a glimpse of my schedule of appointments.  (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th.  He scheduled a test for September 22 as well as October 24.  Both of these are out of town and fasting.  (Fasting is a Type I diabetics worst enemy)  In addition to these tests I have to have blood work and samples dropped off around October 16.  My primary decided I needed two additional tests.  I was scheduled for October 10 & 12 for these.  Again, both fasting.  These are all scans of some sort, not blood work so the fasting is not immediately resolved.

I dealt with the appointment on Sept 22 with the help of some amazing friends.  I left that appointment feeling like I could conquer this.  I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon."  Boy, was I wrong.  I fasted after a rough weekend for the appointment on October 10.  I get to the office and find out the machine went out on the prior patient.  "We are not sure how long it will take to fix.  If you want to go home we can call you as soon as it's up.  It could take all day."  This was at 9 in the morning.  I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting). 

This morning I woke up fasting for a scan that was scheduled for 1pm.  That, in itself, is difficult for a healthy individual.  While I was showering and mentally preparing to get through this day, my phone rang.  The gentleman wants to push my appointment out another hour.  Apologetically he explains, "they completely overloaded me today, I just can't do it sooner.  Unless, you'd like to reschedule?"  In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much."  So, here I am waiting an additional hour to go to this scan.  I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours.  Great!  Two more hours with no food. 

I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with.  It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic.  Fasting only adds to blood sugar issues.  Also, I am still losing weight.  I am pretty sure fasting is not on the recommendation list for better nutrition.  Bottom line of it all, my life is being dictated by my symptoms and appointments. 

I feel completely out of control.  I do try to be as positive as possible at all times for the sanity of my family as well as myself.  There are so many factors I have no control over, I have to let those go.  The problem I am having now is, these uncontrollable factors are affecting my life far too much.  They talk about depression being severe enough to treat if it starts affecting your daily life.  Similar comments have been made about addictions.  If they are affecting your daily routine and responsibilities, they need to be addressed.  What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own.  I can barely schedule anything of my own choosing in the midst of all of this.  Add to that my husband and son who need me.  I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.

Everything in moderation is something I hold dear to my heart.  I am allowing this anger and frustration to flow at this point.  I am allowed to be less than perfect.  Today I chose to let go.  Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.

 It is now at a place where I am no longer looked at as a person.  I am a number or a name on a schedule.  The symptoms, pain, suffering, daily struggles are non-existent to these workers.  I understand that completely with my short career in health care.  You have to separate yourself in order to do your job properly.  You must find a balance.  These are still patients...PEOPLE with families and lives outside of this scan or that test.  It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back. 

I feel like there is no one out there that relates to me.  I feel like an outsider in my own world.  How do I work through these issues without sounding over dramatic and selfish?  Who do I talk to about this stuff without feeling like they are just humoring me?  Where do I turn? 

I pray.  I talk to my husband and family.  I stay in the present moment when I am with my son as much as I can.  I continue to do things I enjoy to have a sense of self in this mess.  I am thankful for the blessings in my life.  I try to learn from ever difficult situation I face.  At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons.  I am trying to do the best I can.  Please, give me a break!!"  I just need some time. 

I wish every minute of everyday that someone out there will have the answer.  Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier.  I want my focus to be on my son and my family more than my obligations created by my health.  Sometimes it is good to really feel what you are feeling! 

Then you stop.....Live for today, pray for tomorrow.

Tuesday, October 4, 2011

You Cannot Hold Me Down

After about a week and a half of feeling practically normal, I hit a wall this past Sunday.  Mostly tired and achy.  I can feel pleurisy acting up in my upper left back that is now starting to radiate to my right side as well.  That is my cue to put the brakes on.  I have obviously done too much for my body to handle and it is yelling, "STOP!"  This time, I listened.

I had a check up with my primary care physician today.  Due to recent concerns, particularly digestive stability, they are keeping a close eye on me these days.  With the week and a half of feeling awesome (in my world) I had hoped I would show some progress on the scale.  My appetite has increased a little and I have tried to indulge in more "comforting" foods opting for the higher calorie, and maybe less nutrient rich, foods.  I know my husband has enjoyed the meals for sure.

For whatever reason, I am always nervous for appointments.  Even routine check ups with a doctor I have been seeing for over three years leads to terrible anxiety.  "What am I doing wrong?  What will they find this time?  Hopefully my blood sugar is in normal range so I don't hear anything from the nurse."  These are all common thoughts that roll through my mind the hours leading up to an appointment.  Today was no different other than the additional thought of, "I hope I put on some weight."  Obviously a very strange thought to be going through a 28 year old woman's mind. 

The nurse calls me up very quickly, actually interrupting my reading (imagine that).  With confidence I get on the scale......and see her pushing that dumb little thing further to left.  My heart drops.  2 more pounds lost in the last four weeks.  How can this be possible....again?  I even ate nearly an entire box of brownies I had made myself on Saturday night.  I had planned to have them around for the week, but they were so good I couldn't stop.  Thankfully, my husband and mother in law jumped in and ate some to save me.  Either way, I have indulged and indulged and still keep losing.

At this point in time, I am actually feeling some fear.  I try to do everything they tell me.  I research and educate myself on healthy weight gain.  I do not want to endanger another body part by putting on pounds in an unhealthy manner.  That would only cause more trouble down the road.  The look in my doctor's face is a look I have only seen a few times in my life.  It is definitely a look of concern.  Normally, I hear some words of encouragement, a plan of action, or what to expect from a change.  Not on these occasions.  When the doctor is left with no words and that concerned look in her face, it radiates pretty deep. 

I left the appointment in despair.  I couldn't help but think that my body is slowly shutting down despite any and all efforts.  I see people rush through life consuming horrible things with bad habits and not a care in the world (or so it seems), but their bodies hold up.  I understand everyone has a story.  Everyone deals with some struggle even if it is not physical.  I understand that the unhealthy habits will and do lead to problems....but I can't help but envy the healthy/ healthier.

Then, I read a blog from one of my favorite sites, sixuntilme.com.  It talked about health in a manner of perspective not science.  Just like any other aspect of life, I suppose, health is in the eye of the beholder.  I decided, this is my healthy.  I am doing everything in my power to be the best I can be.  Beyond that, it is out of my control.  Why should I feel guilt?  Why should I feel a need to act?  Why should I envy what I do not have?  I've done what I can, let it go.

I went to pick up the light of my life from school after my pity party.  Sadly, his day did not go well either.  A few altercations with some kids which meant he lost his sticker for the day.  He was very upset.  When he explained to me what he did wrong (he is very honest), I simple said, "Well, you learn from your mistakes so you know how to react differently next time.  No big deal.  We'll try again tomorrow. "  The poor little guy walked all the way to our truck with the bottom lip out.  When we got home he cried to Daddy about his disappointment in his self (very wise 5 year old).  Daddy responded similarly to me.  "Tomorrow is a new day.  It happened, you had consequences, now let's move on."  That got me thinking.

Here I was feeling sorry for myself for over 3 hours, and honestly several weeks now, and I am trying to teach my son to not hold on to negative feelings.  ?!  This is the hand I have been dealt.  I have also been dealt an amazing husband, a beautiful son, a great family, supportive loving friends, stability, a home, a vehicle, two polar opposite dogs who bring joy everyday, and the love of God.  I have incredible knowledge about health, nutrition, and the human body.  I cannot even list all the blessings.  I could list the downfalls.  That tells me, I have more good than bad in my life.  Take that immune system!  Coming atcha antibody ninja girl.  You cannot hold me down.