You have a service dog? What is wrong with you? Or what not to say to service dog teams, ever!

Today I was stopped by a overtly nosey woman as I was trying to finish picking up some prescriptions at the pharmacy.  She grabbed my left arm [ the arm I have the PICC line inserted into it just above my elbow. ]  The physical grab was startling and it hurt to have her wrap her fingers around my PICC site - I am going on 5 weeks now and the skin around my site has become blistered and inflamed. So touching anywhere around the site hurts me.  I don't try to hide my PICC line any more - I learned the hard way from people grabbing my arm that is is safer to have them notice it and stare instead of grasping and squeezing an inflamed site.  I wear a very visible layering of tights and stretch mesh over my PICC line this holds the extra tubing close to my arm and helps keep the tubing from being pulled free and dragging though a place that could cut the line, crimp the line or damage the line or put bacteria into the line.  So my left arm always has a long white or brightly colored sleeve to help people see there is a long PICC line in that arm and to not touch it.  It is very obvious that I have a special sleeve with mesh and tubing on my left arm. So much so that people often stare at it, or ask me if I was in a fire.  But I prefer them being aware of the PICC and not touching me.  Squeezing a PICC line site can cause serious problems, it can move the line in the artery and throw a clot into my heart - which can cause death. So I really do prefer to not have anyone touch that arm especially on the PICC site.  

Ellie and I in our yoga position - you can clearly see the
bandage sleeve and the tubing.  The white sleeve is somewhat
 see thru so you can even see where the PICC line site it by
 the colored plastic and the purple line.

Well the nosey woman today wanted to talk to me about my service dog.  She was one of those people who does not just ask you about your dog but then crosses boundaries and starts to ask me about my medical condition. She wanted to keep talking but I was tired and I politely thanked her for her compliment on our team's good behavior and excused myself to finish my errand so I could return home to rest.  

Well she was not satisfied that I said I was tired and needed to go.  She followed after me and reached out to grab my arm. It was startling and painful and I let out a yelp and winced with her grab. As I yelped Ellie turned to face her and moved into a rear block to get between her and me.  The lady stood dumbfounded and turned her head to look at what her fingers were feeling; the hard plastic disc of the Stat Lock that holds my line securely in place under the large Tagaderm dressing. Obviously she was surprised to feel the hard plastic and then the tube coming out of my arm.   

As if it could not get any worse, she stood there holding my inflamed arm and spouted out, "OMG, what is that thing in your arm?"  

She squeezed again and I again yelped and immediate swiped her hand away from my arm.  At that moment Ellie reacted and began to let out a low growl.  I then backed up three steps pulled Ellie back into Heal position and started too walk away and she followed me again: calling after me, "I thought service dogs are not supposed to growl at people. What was that?!?"  

Then her voice turned shrill as she blurted out in a really snide accusatory tone,  "that is not a real dog is it, be honest you just bought the vest, right, you bought that vest . . I know, I know I have wanted to do it too.  Where did you get the vest, I wanna get a vest too so I can take my little doggie with me everywhere too just like you?!?" 

By this point I know my face was red, my arm was throbbing and I was close to white hot rage. I turned back and said with the iciest voice I could muster, devoid of any emotion and focused like a laser to try and pierce the fog in her brain.  "She is a real dog and indeed a certified service dog with thousands of hours of training, and the growl was a reaction to the assault you perpetrated on my person by grabbing my arm.  You are now interfering with the work of a service animal and that is a felony crime so please step away from us and leave us alone or I will call the police."  

She was outraged that I was standing holding firm, she began to prattle on with, "I never assaulted you, I barely touched your arm thing, what ever that is  . . . . I just wanted to know where you got your vest so I can take my little dog with me too, jeez!"

I can tell you it took every bit of training and life experience to not rip into her and verbally lacerate her into to ribbons.  But instead I took a breath and moved away.  As I passed her, I said in an even more icy voice, "trying to pass off a pet as a service dog is also a crime, a felony. A service dog must be prescribed by a doctor for a medical condition that requires the use of the dog in order to function.  So when you are saying you want to make your pet a service dog so he can go with you everywhere - you are really saying I wish I had your terminal medical condition.  I would gladly give you all the pain and and anguish my medical condition causes me in my life so you can have a better understanding of how inappropriate and utterly rude and hurtful what you just said was." 

Then I tapped my hip and said, "Ellie heal," and we walked as fast as my shaky legs could get me out of that store.  The manager followed me out and caught up with me on the curb and asked if I was ok. I was shaking and apparently extremely upset. The manager was kind and asked if he could assist me.  The manager had seen the tail end of the confrontation and was appalled at the woman's behavior, and I told him unfortunately these kind of confrontations are frequent with service dog teams.  He offered a heart felt apology and walked with me to my van.

Jeff Helping me plug into my IV pump.

When Ellie and I got to the van I opened the side door and commanded her to load and I crawled in after her and curled up on the floor of the van next to her and she started to lick my face. Ellie knew how upset I was and was doing her level best to get me calm again. When I got inside the van with the door closed I noticed my whole body was shaking and I broke down in tears.  I don't know how long we stayed curled up on the van floor but it was a while.  We just sat curled up together breathing and doing our puppy yoga and slowly I calmed down. It took some time before I could pull my self together enough to get up and out and into the passenger seat.  Jeff had stayed in the van, he was also exhausted and was trying to catch a nap after class while I waited for the prescription to fill inside.  When I climbed in the van it woke him and he was disturbed by how upset I was.  His protector gene kicked in and he started to try and get out to go find the woman - but I stopped him and asked him to just stay with me until I could be calm.  My hands were still shaking the entire ride home.  We got inside the house and Jeff fixed me some hot tea and got me and Ellie comfortable on the couch with our blanket, and hooked up to my IV pump in our snuggle position so we could rest.  Bless him and bless Ellie.

Ellie and I settling into rest and be connected
my IV pump, I have to be connected for most
of the day, basically when ever I am home
I have to be hooked up.

This type of confrontation happens all the time to those of us with service dogs, usually not this overt and over the top - but many times people are clueless to the kind of distress the inappropriate questions about our medical conditions or comments about how they want to get a vest so their pup can go with them everywhere too, can be for us.  

You see whenever some one says they think having a service dog is cool and they want a vest so they can have their dog with them everywhere too.  They don't understand what it feels like to those of us who have a medical condition that requires a service dog. - it is tantamount to saying: 

"Wow how cool is it for you to have you have cancer, you get to wear all those fun wigs!"
 or 
"Neat, I wish I had a terminal condition that causes incredible pain and suffering too, so I could ride on that cool scooter"
 or 

"I wish everything in the world brought up mind shattering memories of death and destruction so I can't stand to leave my room, and could just sit at home never leaving"
  
I don't think anyone in their right mind would walk up to a blind person and say, "I wish I could not see so I could use that cool cane," or approach someone in a wheelchair and exclaim, "it would be so awesome to not have legs so I could ride around in a chair like that."

Service dogs are MEDICALLY NECESSARY for their handlers to be able to function out in the world.  They are an extension of the person and function to help that person navigate the world with their disability. Without their dog they cannot do the things in life most people take for granted.    

Ellie watches over me as I sleep.

So it is in no way cool to tell someone with a service dog that you wish you could have your dog with you too and be just like them.  And no matter how curious you are about the disability is that the person with the service dog is living with, it is never ok to ask what is "wrong" with them.  Medical conditions are personal and private.  You would not like someone walking up to you at the store checkout line and talk about all the embarrassing things you don't want the general public to know about your body, so don't ask people to talk about theirs.  You should only ever ask two questions to someone with a service dog: 

1. Is that a service dog?

2. What tasks does the dog do for
you?

If they are comfortable with discussing their medical condition they will tell you when they describe the tasks their service dog is trained to perform for them.  

And Ellie gets to sleep too.

I know that Ellie and I are a magnet for attention where ever we go - she is a cute, attractive, well trained dog and I have the "talk to me" gene.  I also know we are ambassadors for all service dog teams when ever we are out in the world, and especially around home we are walking advertisements for Operation Freedom Paws. But most of all I know that where ever I go when I walk in anywhere the simple fact that I have a service dog tells everyone in the room that I have a serious disability and there is no way to blend in. 

Usually I am prepared and happy to talk about service dogs, the training and the Operation Freedom Paws program but there are some days when it is all I can do to just get in the store grab the prescription and get out. On those days I try my best to be polite when I say I cannot talk today.  

Today was off the charts crazy. . .  

Diving heals the soul and helps me feel whole again, even if just for 40 minutes . . .

We just experienced two of the most spectacular cavern dives of our lives.  We always Dive with Alfredo Duarte from Luum Ha Diving for cavern/cenote dives because they are exceptionally good dive masters and instructors and their professionalism and knowledge about the cave systems in Mexico are top notch.  Here is the link to their Face book site: https://www.facebook.com/LuumHaDiver  

We have been diving with Alfredo from Luum Ha for 5 years and experienced many cenote dives but our trip to The Pit and The Pet Cemetery were by far some of the most challenging and most beautiful we have done. 

This is a map of the whole system here - we only dove the area called the pit - it is the small squarish part in the upper right of the map -so you can see how much we did not see.

The Pit is part of the Dos Ojos cave system. Exploration of Dos Ojos began in 1987 and still continues. The surveyed extent of the cave system is 82 kilometers (51 mi) and there are 28 known sinkhole entrances, which are locally called cenotes.  Dos Ojos is one of the top three longest underwater cave systems in the world. Dos Ojos contains the deepest known cave passage in Quintana Roo with 119.1 meters (391 ft) of depth located at "The Pit" discovered in 1996 by cave explorers who came all the way from the main entrance some 1,500 meters (4,900 ft) away.  In fact the Pit is where Carlos Coste set the free diving record of 150 mt (490ft) on one breath, back in November of 2010. 

We dove in The Pit. There is a long stairway down to a small wooden platform.  This stairway is relatively new – only a few short years ago you would free jump into the water and lover your gear by rope.  Jeff and I have great difficulty with stairs, and Alfredo and the Luum Ha team are excellent with helping us with our disabilities.  They like us believe diving can be done safely for people with some disabilities and without their assistance in loading our gear down to the water we would never be able to see the beautiful places.  We gear up in the water to take the weight off Jeff’s back and my abdomen.  This is a fairly common practice of divers with our disabilities.  The reason we love diving is that once in the water; we can feel like we have the same strength and agility we had before our injuries.  Diving allows us a feeling of physical freedom from pain, and a quieting of the mind we never have outside the water.  We are lucky to have dive master in Mexico, who understands that diving is healing for the soul and body and is willing to have his team assist us in getting into the water so we can experience these amazing places.

Once in the Pit, you descend to about 120ft – the water is fresh and clear as you are descending and around 95ft you start to see the Halocline, which is much wider here than in other caves.  The halocline is where the fresh water mixes with the salt water. Salt water is denser than fresh water so when gravity forces them to mix inside the cave the water stratifies; forming layers which creating very interesting visual effects.  Most cave systems this halocline is just a few feet of layers mixing, but because of the size and depth of The Pit, the halocline goes on for many more feet creating this incredible white cloud.  As you descend into and out of the cloud there are old braches of trees reaching out of the cloud.  And it looked as if we were ascending from Mordor as we came up.  Here is a short video of El Pit: http://www.youtube.com/watch?v=ggIb4R3QtOw We are editing our video and will post it soon, but here isa fun on to give you an idea in the mean time

The formations in the large room near the entrance to the pit 

The limestone formations in the Pit are breath taking. The death of the caves means they are huge.  During the Ice Age the ocean lowered by about 350ft and this whole cave system was above the water line for hundreds of years. During this dry period humans and animals used the caves for shelter and tress and plants took root.  So the caves are filled with fossils of human and animal skeletons.  They have found a female skeleton, in a fetal position as for burial, and dated her to 12,000 years old.  The Pit has a full skeleton of a giant sloth, which is at least 8000 years old and many other bones.  All of the formations of stalagmites and stalactites in the Pit are exceptional, some are hundreds of feet tall reaching all the way down the wall and then there are the shelves with thousands of tiny needle like formations tucked into the side of the cave.  The main shaft of the cave has several tunnels branching off into other chambers. We stayed inside the main area as it took almost an hour to just explore all the incredible formations along the wall as we were ascending back slowly to the surface.  It was a beautiful slow exploration of some of the coolest formations we have seen: there was a section where is looked as if some one had melted butter and maple syrup down the side in big globs for fifty sixty feet. 

After the Pit, the tram graciously carried all of our gear to the surface as we slowly hauled our bodies back up to the van.  We always joke that it takes days for us to recover from the toll it takes on our physical bodies but the joy it gives our souls is beyond measure.  Personally I never feel more ‘alive’ than when I am diving.  Back at the van the team loaded up the gear and we had a nice lunch break before heading to the next dive at the Pet Cemetery.  

The Ladder down into to big open chamber . . . there was no possible way Jeff or I could go there so the younger couple divng with us took my phone and grabbed pictures of the inside for us.  we stood at the top and heard all the "oooohhhhs and aaaaaaahhhhs" and we very jealous.

Meet Heath and Bobbi Allen - they were the second dive team on the trip and they were both great divers and very sweet to help us take pictures in the places where Jeff and I could not walk to on land.  

 This is the large chamber at the bottom of this ladder that looked like it went down forever.

The Pet Cemetery cenote is a shallow dive with max depth of about 25 ft but most of the dive is actually around 10ft.  even though this is a shallow dive in extremely clear fresh water, don’t let that fool you into thinking this is a easy dive.  The whole path is surrounded by very fragile formation, beautiful formations which make you feel like you are gliding through a crystal palace.  This is a difficult dive because the area is tight, the formations are all very close to you and you must have excellent buoyancy control not to tough the formations or the floor.  

The floor is covered in fine silt and one tap of fin or hard kick and you will fill the whole tunnel with a giant silt cloud.  So you streamline and frog kick very lightly and keep yourself from toughing anything.  This is one of the most challenging buoyancy dives we have ever made. Gliding along in and around those formations made me feel like I was flying. 

Here is a short video of the Pet Cemetery Dive: http://www.youtube.com/watch?v=rj9U1U_5JpY

We shot our own video and are working on editing it but I thought you might enjoy these videos in the mean time.

This is the small wooden platform at the entry of the Pet Cemetery, this is shallow and ha heavy silt - so the team packed our gear here for us and we very carefully dressed in the water. Dressing in the water allows me to suit up without causing a huge amount of pain to my abdominal muscles.  I wear a full 5m suit and an abdominal binder to try and lesson that pain during the dive but dressing in the water is a huge help and the only reason I can do dives like this. Diving is an adrenaline sport, but it can be done safely for people with all kinds of disabilities and the more dive masters understand the type of assistance the diver needs the more the can help more people experience the wonder of being under the water.  

The overhead environment is close all around you, you are swimming very close to fragile formations that are thousands and thousands of years old and the floor is a instant cloud of blinding silt.  You touch the floor and you fill the clear water with a silt cloud and if you hit the wall or ceiling you are damaging history. So you get your buoyancy right and start gliding along with great care. This is what I meant by a very challenging dive.

The Pet Cemetery gets it’s name from all of the skeletons found on the floor of the system, where animals wandered in to die thousands of years ago back before the water rose inside the cave.  You can clearly see one full skeleton and several pieces of a huge jawbone plus many other bones. It is a rather exciting history lesson to know the how and why of these amazingly beautiful structures we are now blessed to experience.  There is something quite humbling in those limestone structures, something almost awe inspiring when you realize the millions of years it took to form, the synchronicity of the ice age dropping ocean levels and allowing life to flourish inside the cave and then finally the slow rise of the ocean back to modern levels. All of that had to happen, in that order over that time to allow us to behold the beauty now.  To know that those caves have only been being explored by a very small number of people since the late 1980’s makes me feel very lucky indeed to have experienced them and hold them as part of my soul.

The formations are incredible - he is an example of how the stalagmites and stalactites grow together over time to form columns - now image those columns standing 100's of feet high in the deeper caves.

 All of the bones were in the cave before the water started to rise again so that means they are all at least 8000 years old.  those are some pretty good looking 8000 year old teeth, huh?

Large jaw bone with all the teeth still intact and a partial skeleton of a deer below.

There is now a beautiful new museum on the Dos Ojos site: The Institute of Pre- History of the Americas, that has great exhibits about the ice age and how the fossils came to be all through out the cave system. Here is their Facebook site: https://www.facebook.com/pages/Instituto-de-la-Prehistoria-de-América/155086507853455

If you go to Dos Ojos now – stop at the museum.  The museum building also serves as a meetinghouse for the local Mayan community – a gathering place where they can come together and work with the government researchers.  The cave system is on Mayan land and has been part of their history and culture from the beginning so it is wonderful to see the cooperation between the local people and the researchers.  These caves have only been explored since the late 1980’s and there is so much more yet to find.  The museum will soon house a onsite lab where researchers will be working on fossil finds and the public will be allowed to watch how fossils are brought up from the water and then preserved, tested and replicas are returned to their exact locations. This is a one of kind collaboration with the local Mayan population working to preserve the rich history of this land and the peple and animals who have been inhabiting it for thousands of years.

This is a reproduction of the site where the skeleton of the female's skeleton pictured above - the bones are arranged in a fetal position as if she had been wrapped for burial. the bones were placed before the water rose and that is why they stayed so close together, the skull had an air pocket inside and as the water rose it lifted and turned allow the air to escape and that is why is rolled off to the side slightly when it return to the silt after the water rose above the bones.  To date they have found the oldest fully intact skeleton in the new world - a woman they named Naia and then have found another young man dated about 10,000 years old here in the cave system.  This cave system is one of the third largest in the world and still not fully explored so it is exciting to imagine how many more finds there could be in the waters down there.

They did a reconstruction on the skeleton face and determined this is what she would have looked like. She was around 45 years of age but because of the difficulty of her life she would have appeared much older by our modern standards. these people all used their teeth as their main tools, so their skulls and jaw bones and teeth show a lot of wear and infection.

 Diving for both Jeff and I deeply important to us; not just because we are both disabled with medical conditions which can make life outside the water difficult, but because of how being under the water in the full glory of nature can heal our souls.  I spend a lot of time in and out of hospitals and on Picc lines having having blood transfusions and other medical treatments which make life not so much fun.  so When I am free from those treatment even just for a month or two we try and get underwater again. We run off to feel the ocean around us, see the incredible formations in the cenotes and be with all of the abundant like on the reefs.  Those few precious moments under the water refuel our souls, and even though it may take our bodies a while to recover every second we get under the big blue is worth every moment of recovery outside.  I know my diving days are limited as my condition progresses, but until then, I will fight like hell to keep getting back there.

This is why we are working to help other disabled veterans and civilians learn to dive. SCUBA, and being in the water allows us to feel whole again and move with the agility we had before our injuries or illnesses.  Sharing the gift of diving with other disabled veterans is a life long dream so they too can feel whole again in the big blue.

Today was a tough one, one of the worst in a while.  I know all to well that I could have it worse and that there are plenty of people out there who do.  But today was one that stretched the envelope on my own strength.  I woke up to find my PICC site bleeding heavily again.  It soaked through the dressing and leaked out of the waterproof seal and onto everything.  Seeing more blood scared the shit out of me: knowing the amount of medical crap that would follow.

This is how it started - feeling a trickle of warm blood coming out of the dressing and running down my arm into a pool on the pillow.

 And it did follow; first the on call nurse looked at it, and she refused to do anything but call an ambulance, which I refused to get into because it would route me to the nearest hospital which is not the care needed.

So we headed to a slightly further ER with better care and cued up for the fight to see if I would be admitted to the hospital.  By the time we got to the ER - I had the blood running out of the bandage and into 4 layers of gauze sponge. They have to X-ray the line - make sure it is not bleeding because you pulled it out or something, they confirm the line is working, then they clean up your crazy bloody mess, and give you a new sterile dressing.

Here I am waiting . . . . and waiting . . . .

 And waiting some more . . . Jeff fell asleep in the chair next to me - poor guy has been up all night helping me every time the IV pump alarm goes off from air in the line or an occlusion of the line.

And then they want to keep you for observation, make sure your line is working, that your gut is trying to work.  And they listen to your guts and it makes no sound, or just a high pitched whistling sound all of which cause them to all make that same worried, "I don't know what the fuck to do" face.  Then you discuss the pros and cons to being admitted.

1.  The cost I cannot afford, I would be getting exactly the same treatment, same meds and same IV and same nursing care - with less sleep for 5x the cost.

2. I would be exposed to germs that with my compromised immune system could kill me.

3. Did I mention the cost and the burden that cost places on my family?


Thank goodness I got them to listen to reason and I was released beck to home nursing care.  Back to my little room with my IV pump going beep beep beeeeeeeeeeeeeeep every 15 minutes. I came home and started that iv pump again and drifted off to sleep hoping beyond hope that I would wake in some other life.

Funny thing is that I had not stopped to look at the date until after I posted this.  It was a year and a day ago when I fell unconscious while on a PICC line and had to be resuscitated by my husband, who performed CPR until the ambulance came.  My life changed that day, it dropped to a whole other level of living with illness, and a year later I fear we have leveled up again towards the big boss battle that comes at the end of the game.

"Get over it" is never a good response . . . Or how a damaged GI tract makes even the most mundane of head colds an adventure.

I write here to help people understand how things are different for me and hopefully give some deeper perspective to what life is like in it’s costs for me and in turn possible for others.  This post comes from a off the cuff remark made to me to “buck up, cause it is just the flu, we all get it,” statement.  Which is true we all get the flu, but it affects all of us differently and if you understood what being sick with the flu does to me, you might think twice about telling me or anyone else to just “get over” their flu symptoms.

So everyone understands that having a serious bout of influenza will knock you out and if it progresses to pneumonia well then it will certainly put you in bed for a while. For me it is slightly more complicated. Of course I have all the normal accompanying symptoms of sinus pressure, mucus draining, difficulty breathing, low energy, aches, chills and coughing. But in my body the symptoms take on a new level of special fun.  If I have a bacterial infection and need antibiotics, oral medication have difficulty working cause my intestinal damage does not allow them to absorb. I rely on injections and IV infusions of antibiotics which can be done in the doctor’s office and at home with help form a nurse or worst case after hours in the ER.  If I don’t get to the injection soon enough, I have to go to intravenous infusion. If I have to have an IV then we have to make sure that I am not already too dehydrated to accept a regular IV site in my lower arm and most times have to move to a surgically implanted PICC line in the artery of my arm. the problem with being sick is that most times if you don't treat it, it just gets worse.  So the time it takes for me to get treatment usually means the initial illness has progressed to something worse like pneumonia.  I experience all of the normal pneumonia symptoms but some of my experience are uniquely my own:

Above is a Peripherally Inserted Central Catheter (PICC line) is a form of intravenous access that can be used for prolonged period of time to deliver fluids and medication.

Above: One of my PICC Lines.  I have to have Picc lines because I need to receive fluids and meds for weeks at a time, and a normal IV site will fail in about 2-3 days in my arm.  

Hydration or lack there of:

I live in a constant state of dehydration; my gastrointestinal system cannot pull enough water out of what I consume to keep my body hydrated adequately. This is why you see me with my metal sippy cup always in my hand. I have been told by my doctors to never stop sipping, and I always keep liquid in my cup I like cause I need to tug on it all day. I keep that sippy cup with me at all times, and I pack a cooler of ice and more liquids to refill it everywhere I go and I take a fair amount of grief for the practice. people constantly ask why the hell I pack a cooler to go to the store, or doctor or anywhere. I can't guzzle liquid, I don't have the space to accommodate large amounts of liquid all at once - so I have to sip and sip constantly.  Most people can down a bottle of water and then be drink free for a few hours, I cannot.  

I rarely consume alcohol, cause the meds I take are already hard enough on my liver. As a good southern girl, I always keep my glass full of ice, because I like things cold and ice melts and adds water to the drink.  I do drink soda, and my doctors and I go back and forth on this. Universally soda is not a great choice, but there are mitigating factors for me.   I do not absorb the full amount of caffeine, or sugar. We know this scientifically because my A1C (the blood test that gives an average of your glucose levels over a 90 day period) is always between 4 and 4.5.  My doctors and I have reached a compromise, as long as the A1C stays in that range I continue to drink soda, the day the test shows a higher A1C, I will quit.  The other part of this is my daily intake of “food: is usually 80% broth.  My body has difficulty with real food a lot so my usually intake consists primarily of broth.  So even without the Soda I get a lot of water in the broth form.  Yes, I know there are better choices to drink and I do take advantage of teas, juices, water and more, but I look at it this way. My daily dietary intake is usually so limited to really crappy bland liquids like chicken broth that my one constant enjoyable vice is soda. Trust me – go on a broth diet for a week, skip all food and only intake broth and other liquids and you will begin to understand why you may just have to pry that Dr. Pepper out of my cold dead hand.

That being said, I am always on the brink of dehydration even with the sippy cup graphed to my hand, I still can’t get enough liquid into my body.  When I get sick with a cold or flu I feel bad and try and rest, so my consumption of the ever-present sippy cup is lowered. Here is where the dehydration plays a fun trick on me, as I get more dehydrated my nausea levels increase and the less I want to put anything into my system.  When I have flu I have a solution for this, I freeze Gatorade mixed with protein drops in ice cube trays and then crush the “gatorice” – ice chips melt in my mouth and provide liquid without tripping the nausea switch.  But this does not make up for all the lost sipping opportunities, so if this goes on long enough I end up with an IV to give me hydration.  When my flu progresses to the pneumonia stage, 9 times out of 10 I will be placed on a PICC line and given fluids along with the needs meds for weeks.

Above - is me getting hydration and meds for a bowel obstruction -count the number of bags in this IV chandelier.

 I usually require at least two pumps with multiple bags of fluids and meds. It makes a strange sight, to me it always seems like a Dr. Seuss chandelier.

 An easy outpatient session: I am getting 650ml of iron here.  I have to do this every 3 - 4 months and I do multiple sessions of that amount of iron.  

 Notice how the Iron looks like motor oil as is flow into the body - kinda creepy huh.

 My usual excited face when I have to go for outpatient infusion.

Way better than my excited face when admitted to the hospital.

Coughing . . .  a cruel torture all on it's own:

We all hate coughing, that annoying reflex action meant to clear the gunky mucus from our airways.  I hate coughing in the same way I hate vomiting, because that reflex action of my abdominal muscles to force air up my trachea also forces sections of my intestines to push through the multiple fissures in my abdominal wall.  The act of coughing squishes my intestines through my the holes in the muscles of my abdomen and once they are stuck in those hole the reflex action of the next cough pulls, and rips on those same intestines.  As my poor intestines get stuffed and stuck in these holes they twist, and kink and start to swell.  All of this causes ungodly pain.  Anyone who has ever had a hernia will help explain that pain, cause it is unlike any other.  To me it feels like some one jabbing a molten spear into your side over and over.  On particularly rough bouts I have been known to black out from a cough, squish, cough, rip moment.  Most of the time I lose my breath and try to find a way to lie back enough to use my hands to help push the intestine back through and free it from the fissure.  I have had 5 hernia surgeries to try and fix this phenomenon, but once the muscles of your abdomen rip they cannot grow back together – so I am stuck with what I got. Currently, I got one really big hole, 12 x 14 that is covered by a slightly larger mesh – this is screwed into place and theoretically holds my muscles together and keeps the intestines on the inside. There are smaller fissures around the edges and a few other rips lower and on the side.  Meaning there are lots of places for bits of intestine to get squished and trapped into my abdominal wall. This is the bulk of abdominal pain that I feel daily. 

An example of how the bowel can be pinched by pushing through the abdominal wall - this is what happens when I cough.

The mesh and below the screws that hold the mesh by screwing into your muscles - when I rub my tummy I can feel the screws through the skin.

The main problem with having parts of your intestines squish into holes in your muscles is that when they are in the squished up position they stop being able to allow what is traveling inside them to pass along.  This is how the obstruction occur. 

Above is a radiograph of a bowel obstruction - on left side - below is how a normal bowel should look.  The obstruction shows how the dye is stopped on now side.  In the normal view - the dye runs the entire course of intestines through out the abdominal cavity. When I have fluoroscope tests dine there is always the moment when the radiologist calls in other radiologist to check out what is on the screen because my "normal" only has bowel on the right side, the rest was damaged and removed.  So I am always a spectacle to see during testing. 

When a bowel obstruction stops the flow of material down the GI tract and my whole body goes in to panic mode. First every bit of water in my body’s cells are pumped into my GI tract to try and flush the blockage through. Second the muscles of my abdominal wall start violent contractions to help the fluid now gathering in my intestines flush out the problem.  These contractions of muscles cause anything and everything on either side of the blockage to leave through the closest door in what can be described as a panicked evacuation.  Many of you have experienced this in the throws of a seriously bad stomach flu.  This contraction and evacuation will continue until the blockage is removed or until you are given a medication to stop the action.  In my case the violent contractions are continuing to pull rip and tear on the bits of intestines already stuck in the fissure of my muscles and can in some case push more bits of intestine into more fissures causing more blockages.  And the pain of this action is, well, bit hard to explain other than, holy mutha of all that has ever caused pain.  This is the point where I get the trip to the hospital and start the process of morphine psychosis.  A hospital stay for one of these blockages is usually 9-13 days long.  I luckily have not had to go into emergency surgery, as of yet.  One of the eventual side effects of all of this fun is that a bit of intestine will stay kinked long enough to cut off the blood supply and that section will die, and begin a septic infection.  In those cases surgery happens to open your muscles to remove the dead or dying section and try to avoid the infection that will kill you. Luckily the fissures in my muscles are large enough to allow the intestines to squish in and back out on their own usually over time.  This is quite fortunate in a sisyphean sort of way.  It keeps me alive so I can experience it over and over.

Oral medication is not really all that effective:

My Gi tract has difficulty in absorbing medications.  The same damage that keeps my body from pulling vitamins and minerals out of the food I consume also keep me from absorbing oral medication. Often pills can travel through my GI tract whole and intact.  This becomes a fun game to show the nurses and doctors who don’t believe what they are reading on my charts.  I take the pill from the nurse and in roughly 4 hours, [the normal travel time in my system which is greatly truncated] I point to the little hat in the bathroom and show them the pill.  When you have been through as much GI distress as I have for the past 13 years – seeing a pill in your poop is nothing.  So if the pill does not dissolve it does not absorb. Some meds partially dissolve and therefore partially absorb – but we do not know how much so dosage for me can be very difficult.  This is why I can take 3-5 times the recommended amount and not have ill effect.  It is also why I continual get to explain to pharmacies why the dosage, which I am prescribed, has not killed me.  This is primarily why many of my important medications are given by trans-dermal patch, injection, or IV.  When most people get the flu they can see their doctor and be prescribed the z-pack and run off to CVS pick up the pills and be done.  iN my case, my doctor calls in prescription to the infusion clinic, and I have to schedule time to go into the outpatient clinic for the infusion.  Or I have to go to the ER if it is after hours on weekends or the infusion clinic is too busy.  CVS can’t fill Infusion orders, you have to go to special pharmacies, have special permission from your insurance, have a nurse come to your house to administer and the whole process takes time and lots of money.  It took years to build a case history to help my insurance company understand why I need infusions, a case history built on multiple trials of the oral drug that failed and following hospital stays.  Thank goodness for the Affordable Health Care act which allowed me to buy my own health insurance, because without it I would be back in the “take the oral meds until they fail enough and I get sick enough to be hospitalized” stage.  The home nursing is expensive but in comparison to a hospital stay it is about 1/6 the price.  As the hospital stays cost tens of thousands of dollars, and if I am in for 13 days it is hundreds of thousands. 

So when you get a cold or flu after hours or on a weekend and get angry about that $350 dollar ER bill, count yourself lucky. 

I don’t have the luxury of going to the urgent care when I start to run a fever and pick up a z-pack and hunker down under my covers for a few days of marathon netflicks and popsicles . For me a bout of the flu is a serious threat and can be a real game changer in my plans.  In the past 18 months I have had the flu progress to pneumonia 6 times.  I have been placed on a PICC line for hydration and medication 3 times, and been given regular IV’s the other times.  The gastrointestinal tract regulates the body’s immune system, my GI tract is heavily damaged and therefore my immune system is heavily compromised.  It has been suggested to me that I refrain from exposing my self to germs, live in a sterile bubble.  But to me that is not living.  Interactions with my friends and family are living to me.  I don’t want to live without living, so the cost is getting sick sometimes.  I know this, and I accept this.  It is what it is.

But before you start to tell me or hopefully anyone else to "get over it", when you hear I am down with the flu or pneumonia again, take a moment to understand what you are asking me to “get over”. The one or two sentences in a status report on FB do not begin to scratch the surface of what I am actually going through.