Gut Feelings….

Back at the end of May, we were back at Mayo for an additional incisional hernia repair that developed.   It was an “easy” surgery and we were home pretty quickly.  When we got home I ended up back in the local ER with abdominal pain and a diagnosis of a bowel obstruction.  This was another week in the hospital being NPO, receiving only IV fluids and suppositories.  Not a great time.

This leads into all summer I have felt that I still had some type of obstruction.  I told my local drs, er drs, and my mayo team during my visits in July and August.  I had X-rays and scans and was told that there was a lot of stool in my colon but no blockages.  OK…who am I to disagree, I am just the patient.

I kept having very severe bouts of pain that would physically take my breath away but didn’t last terribly wrong and it was just explained as pain from adhesions.  The first part of November I was admitted to the hospital locally again due to a flare up of my asthma/COPD and possible pneumonia.  I had also passed out at home a couple days before from very low blood pressure.

My lungs were improving and then while in the hospital I was hit with the breathtaking pain again.  Of course all my family had just left for the evening.  I sat there clenching my abdomen waiting for the pain to go away but it just kept getting more intense.  I called my nurse and she basically blew me off.  I waited several minutes and called her again and told her I wanted her to call the dr.  She rolled her eyes and told me it was probably gas.  She came back in the room and gave me some milk of magnesia and again told me it was probably gas again.  At this point I am crying.  I ask if she has called the dr yet.  No, she wants to see if the milk of magnesia helps me first.   I am begging her to call the dr, she rolls her eyes again and walks out.

At this point I call my family and ask them all to come back.  I KNOW that something is terribly wrong and I cannot get my nurse to even page my dr.  Long story my family gets back and this nurse is just as terrible to them.  We ask that she be replaced and and get the nicest nurse ever.  Drs are called, scans are scheduled and now finally after hours of excruciating pain, they are finally ordering me pain medication.  They start dilaudid and it does nothing.  It seems like it takes a truckload of it just to get to where my pain is manageable.

I have CT scan and my bladder is about to burst from urinary retention, I have an ileus and what they believe to be an obstruction and part of my colon is herniated up into my chest through my diaphragm.  I am immediately catheterized to empty my bladder.  That in itself was a huge relief.  Then we finally got my pain to a tolerable level.

The next morning mayo was called and they said they would just manage my care from there over phone and video.  We were so relieved to not have to leave.  Moments after we celebrated that news with our pastor who was visiting.  An hour or so later, another call came from Mayo.  My team there had furthered reviewed my scans and wanted me there for treatment.  Arrangements were made for me to be flown by lifeteam from Kansas to Rochester, MN.  This happened first thing in the morning.  I was taken by ambulance from the hospital to airport and loaded into the lifeteam airplane.  These are the most awesome caring people ever.  I had a PA and a paramedic as well as pilot and copilot with me.  The total flight was an hour and 45 minutes.  This is usually about a 9 hour drive for us.

I arrived at Rochester airport and was picked up by an ambulance there and then take to Mayo Clinic St. Mary’s Hospital campus.  This is where my “team” of drs are and where all my prior visits and surgeries have been at.  I was alone when I arrived as my husband was driving up so we would have a vehicle to get back home.  Little did we know that this was the beginning of another long stay and surgery.  Thankfully only 19 days this time……

 

 

angry, anxious and being an asshole

My new continuos glucose monitor.  

My shelves of medications and medical supplies and devices…….the pharmacy loves me….

Yep…I haven’t posted for a while as I have been struggling with many things.  First, of all I know that by putting things out in a public format for the world to see can cause a lot of good and inspiration, but I also know that it can cause a lot of criticism.  I thought I was prepared for the criticism as I have dealt with that for years….but I just found myself getting super angry.

I am very open about my journey and my struggles.  I also try to share the good in my life as well, because nothing is ever 100% bad.  I started hearing things, getting some messages and hearing things that other people said to others.  I’m not gonna lie, I got my feelings hurt.  It doesn’t matter who or what was said and it should not bother me but I am human.

So…not to give the critics too much power but to also clear some things up…here goes.  Now that I am super thin and try to take care of my appearance, a constant that I hear is how I great I look.  I try to look good….my scars are for the most part all hidden under my clothes, my illnesses are not visible on the surface.   Just because you cannot see my pain, my scars, my anxiety, my illnesses…believe me when I say that they are ALWAYS there.

I have been very blessed to travel some this year.  I was able to take Jacob to Hawaii in February to attend my cousins wedding and celebrate Jacob’s senior year.  This “senior trip” is a tradition we have done for each of our children.  This summer I had to return to Mayo Clinic for post op appt and other consults.  I made both of my boys go with me.  After my appts we were told that I had to be back the following week.  After discussion with my husband we decided to take that week and see Mt Rushmore and Yelowstone Park.  My parents took time to meet us and bring me additional medications that I needed and help share the cost of hotels.  At the end of August my dad invited me to go to Colorado to celebrate his 71st birthday and jeep in the mountains.  We spent some quality time together and were then joined by my mother and daughter and also a cousin.  I was also blessed to see some lifelong friends while there.  Earlier this month, my husband and my parents and myself took our “baby” to Florida for his “senior trip”.  All of this travel was amazing and the memories made are priceless.  The only damper is people that have the nerve to question how I can afford to travel, how I can travel if I am really this sick….it goes on and on.  To put it bluntly, how we can afford it is no one else’s business.  How I can travel is with an entire suitcase that is dedicated to all of my medications, medical devices and important records.  I also take high doses of steroids every time I travel so that I can breathe and have some energy.  There are also many things that I cannot do simply because my body has to rest or I am having a flare up of some type that prevents me from going out.  I have been fortunate to not need any hospitalization while traveling.  The scariest times were this last trip to Florida.  On the flight there I developed a lot of breathing problems on our first flight that worsened on out second flight.  Luckily these were brought under control in about 48 hours.  On the way home on our last flight I was doubled over in pain and then my blood sugar crashed to 35.  I have to say that the stewardess was awesome at getting us what we needed and doing it discreetly so that no one else even knew that I was struggling.  Go Delta!

I came home to a letter from my long term disability company that they were stopping my benefits as they felt that I could return to work.  I freaked out, went and saw my physician and got his opinion which he had already sent them a statement months ago stating that I was disabled from any and all occupations and there was no expected improvement in my condition.  Now I am having to file an appeal and try to get those benefits reinstated.  This has completely stressed me out as I cannot believe that anyone would think I would choose what I live with over working.  Fortunately, I still have my social security disability but this has made me feel constantly worried about my future.

I also had a CT scan earlier this month for ongoing abdominal pain bowel issues.  There is apparently parts of my colon that have herniated up into my chest.  It also shows another hernia in my abdominal wall.  I am also having trouble with obstipation…like constipation but worse.  I don’t know what this all means for me if anything.  My surgeon at Mayo had been notified and we are waiting to see what his recommendations are.  However, both my local physician and myself highly doubt that I could survive another major surgery at this time.  So….we will see what they think at Mayo.

I will lose my COBRA benefits at the end of this month.  The majority of those premiums were paid by my long term disability insurance.  I am fortunate that I still have insurance coverage through my husbands employment, but not being double covered will increase what we pay out of pocket a lot.

All of these things have been constantly on my mind lately making me angry, more anxious than normal and acting like an asshole to the people I love most.  I have been chewing on the inside of my cheek and lip til its raw and has sores now.  I have been praying and praying, trying to lay all of this at Gods feet.  I know in my heart that everything will work out the way it is supposed to.  My mind however, wants immediate answers and resolution.

I will get through this.  I also want to say a special “thank you” to the people that have messaged me that have missed my blog, checked in on me and constantly support me.  Yo u helped me to remember why I started this in the first place.

day to day

I have learned that this “new normal” that I am living is really a day to day process.  I never have a clue as to how I will feel.  I may have a few good days, then a few bad days. I think the hardest part of recovering from the loss of my stomach is the ability to plan anything.

I am learning to be prepared for anything at anytime.  Combining this with all of my other illnesses and the uncertainties caused by them as well leads to some crazy times.  It’s not a bad life, it is a different life.  And with change there are always up and downs.

Sometimes I feel like superwoman and other times I feel like the biggest burden on every single person in my life.  I keep trying to make a schedule for myself and have realized that it is pretty impossible for me to follow any kind of schedule.

I eat as much as possible whenever possible.  The hardest part for me with eating at this point is trying to eat when I have absolutely no appetite.  The victory is the times when I eat and something actually tastes good and I can clean my plate!  My body cannot tolerate dairy, sugar or carbohydrates well at all.  I either get violently ill, severe diarrhea, racing heart rate, drastic blood sugar readings, sweating, faintness…the list goes on.  I avoid these things as much as possible especially sugar, but occasionally I just have to try again.  A glutton for punishment.

I finally received my continuous glucose monitor!  It is a small pain in the ass, but so nice to be alerted that my blood sugar is falling before it is down in the 20s or 30s!  Due to having such severe hypoglycemia so often, my body no longer recognized the symptoms until I was dangerously low.  This is going to be a great tool to avoid those times.

My fibromyalgia has been at its all time worse lately, but slowing getting a little better.  My breathing is always back and forth but holding steady for the moment.  I still have a lot of pain from my incision and was told that I have post thoracotomy syndrome and started on yet another medication to try and help with that…so far I have not noticed any improvement, but I will give it more time.

The plates and screws in my ribs continue to bother me on a daily basis.  I think that if I had some fat on my body to “cushion” that area it might not be so painful.  I am maintaining my weight and did actually gain about 7 pounds, but have now lost those 7 pounds.

My loose sagging skin (gag)….seems like this shouldn’t even be an issue for me with all the other stuff I have going on, but I HATE it and the fact that I cannot do anything about it.  Yes, I could have surgery but I am not a good candidate for surgery.  Unless it is emergent its just not going to happen.  So I am trying to accept this grossness and make fun of it and laugh instead of cry!

 

Rough times

I think that the hardest thing for me to answer is, “How are you feeling?”  I usually just say fine as it is the easiest way to answer.  There are good and bad parts of every single day heath wise, some have more good and some have more bad.  I have accepted that is the way that my life is and again, sometimes its ok and others not.

Things that make me grateful…Number one on this list is that my children are healthy.  I have always asked God to keep my children and my husband healthy and I will endure any struggle that I have to face.  I know and know of so many people that have children with chronic, life threatening illnesses as well as people that have children with cancer.  My sister had cancer when she was 10 months old and had to have her kidney and adrenal gland removed and radiation.  Fortunately she is now 48 and has never had any other major health problems.  I marvel at the strength that my parents had to have at that time and the fear that they had to have felt.  I pray daily for all of children that are ill, as well as their families because trust me, no one is sick alone.

I know that my illnesses have caused a lot of stress and fear for my children, husband and family over the years.  The crappiest part of it is that I can do nothing about it.  All I can do is try my best to be healthy and always be honest with them about my situation.

So…the last few days have been pretty rough.  I am having a lot more pain and trouble eating again.  I am hoping that it is just a fluke and will pass.  If not, I will mention when I am at the Dr next.  The weather is also changing here and my fibromyalgia is flaring up pretty bad.  Fortunately, my appointments for the moment seem to be getting further apart.  This is awesome as I hate going to appointments, but also a reality check that this is as good as it gets as well.

I can totally survive with the quality of life that I have now.  I still deal with a lot of guilt for not being able to work anymore but I am dealing with it.  I am also still dealing with a lot of anxiety as well.  It seems to come and go with no real rhyme or reason.