Living With Chronic Diseases - Two Remarkable Articles of a Doctor Talking to a Patient and the Patient Talking Back: Great Resources

Sometimes when you are living with a chronic medical condition the world does not make much sense.  You learn the limits of your body in all kinds of strange ways.  Pain that would drop the average person to the floor over time becomes your daily roll out of bed. Spending hours trying to figure out how to dress for a medical appointment so you don’t look too put together and the doctor does not believe you or you don’t look too bad and the doctor thinks you are giving up. The things you start to find normal are far outside what most people see as normal.  Most people go to doctors to fix a problem, they have a medical issue and they and the doctor work to resolve the issue.  But with chronic illnesses sometimes there is no fix.  In chronic illnesses sometimes you go to a doctor to start a relationship because you know one day you will need their expertise even though all their expertise will not fix you. 

Ellie and I in another hospital stay, a recent round of sepsis. Those are words
you don't really think your are gonna say a lot. But I have learned that over
anything is possible. I have had three rounds of Sepsis now. 

This open letter to a doctor - it was in response to an article written by a doctor explaining why chronically ill patients with non-fixable conditions scare doctors. Both the first article and the open letter response are very well written and explain so much of what I have lived and experienced in the past 15 years.  If you are starting down the journey of a chronic illness, living with one or helping a loved one live with one - these two articles are a definite helpful read, they are honest and candid about the interchanges between patients and doctors and how human frailty on both sides of the coin can be a point of the clearest and most beneficial care. Here is the open letter from a patient with chronic illness to doctors: http://themighty.com/2015/11/to-the-doctors-of-chronic-illness-patients/

The original article written from the doctor's perspective is linked in in the  open letter and here is the original url as well: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

Both of these pieces hit me so close to home with what I am going through currently in my battle with my own non- fixable medical condition.
I am about to start a new relationship with a GI specialist which in the best case will be the doctor and surgeon who has hospital privileges at the closest hospital capable of dealing with a life threatening emergency surgery that is the possible outcome of every bowel obstruction I experience. I have bowel obstructions at least a couple of times a week, they are part of my existence and they are becoming more serious and more frequent and that is just how this goes. This is the eventual outcome and one that is the realistic preparation for an episode that will occur in the next couple of years of my life. One of these bowel obstructions will rupture my bowel and parts of my intestinal tract will loose blood supply and die off. When a bowel obstruction goes bad it happens fast and the only solution will be an emergency surgery within hours to prevent death. I have known this fact for a few years, and it is just part of my medical condition. It is not unfair, or sad, or overdramatic or anything other than what will eventually occur. I consider this knowledge a blessing. I know the day will come, I don't where or when but I know it will occur. My attempt to have a good working patient doctor relationship with an excellent GI doctor is part of my preparations to survive that day. I will need a damn good GI surgeon who understands my case history and has dealt with very complicated, multiple previous surgical reconstructions; which have left my abdomen full of scar tissue and very little small intestine.

Ellie and I in the hospital, stays are so much
easier to tolerate because I have her with me.
Before I had a service dog, the predominant
experience of hospital stays is how much time
you spend alone. Hospitals are remarkably
lonely places considering someone opens
your door to come in and poke or prod you
two hours.

I am starting this relationship knowing full well that there is no solution, no cure, no magic, new, or experimental treatment.  There is only the clean up of a ruptured dying bowel and the salvage of any part of my GI tract that could keep me from living completely on IV nutritional replacement.  The surgery will end in some part of the function of my GI tract happening in a plastic bag outside my body.  I know this, once he/she has read the 15 years of medical history he/she will also know this. Then there will be the collective silent head nod as that realization is shared. My hope is he/she might have a perspective which may delay this surgery for a little while longer, and that together we will research on how to delay it for as long as we can.

This is a scary appointment, one I am nervous about.  I am extremely lucky to have a great general doctor who has known me and helped me survive the last 15 years. It took me a long time and many failed attempts with other doctors to finally find and build a good working relationship with her. She has worked with me to help me live through three different expiration dates, that I was not supposed to survive. She has seen the progression of symptoms; she has seen me fight tooth and nail to stay alive.  She also is willing to work with specialists, read and research articles. She always admits to me when she does not know what to do, and we talk through how to approach things.  She is the first doctor who I have ever felt that treats me like a person with equal intelligence and resourcefulness. I am extremely lucky to have her as my doctor. It is why I travel 2.5 hours to see her 2x a month. I don't drive anymore so securing transport to her office is a juggling act of multiple schedules with multiple people. And the distance is why I need to open a relationship with a GI specialist who is closer, because when a bowel obstruction goes wrong it goes very wrong very fast and I have only hours before it goes too wrong to fix and I die. To prepare and to continue to fight to stay alive I have to have a working relationship with a GI specialist and surgeon within range of the closest hospital that can handle a serious bowel rupture in a patient with multiple previous surgical reconstructions. That is the honest reason for the visit and that is a hell of a "hi my name is bomb" to bring into the exam room on your introductory visit.

My hope is that this new doctor will appreciate the candor and the realistic expectations of the situation. That out of this intro we build a relationship that will help me keep fighting for as long as possible.

A hospital stay over valentines day - the balloon sang
"hot stuff" every time it was moved, so of course we tied it
to my IV pole so I would be a parade float walking the halls.
My husband recounts that he got me the singing balloon to
the nurses keep track of me . . .
I used to try and make a break for the vending machines.

I don't really like the idea of my health update posts to be public, not because I don't want people to know about my medical condition, it is already fairly public knowledge. When you walk around with an IV line hanging out of your chest going into a rolling IV pump and your service dog people tend to notice that you have a medical condition. But still I always question if I share too much, because it feels almost too vulnerable to share this level of honesty with my friends. People don't react well to words like death and eventual outcome in the same sentences.  Most people want to see positive affirmations of how you are fighting the good fight mixed with some dark humor about where does that doctor think that tube is going???  But so far the good coming from people reading my experiences is outweighing the fear of the bad and if just one person get something helpful, then it has been worth it.  With how hateful so many comment threads have become in recent months on so many public social media sites, I am not willing to subject my decisions about my health care to a stranger who's goal is to use the comment thread to insult or belittle my situation. The world belittles and degrades sick people enough already. I share my experiences with my medical condition in hopes of helping to educate others on how to advocate for their own health care. I don't have any answers; I only have experiences that might spark an idea or discussion that could help some one else.

photo of one of my IV poles with 8 bags
running, it reminded me of a crazed chandelier
I remember texting that joke to a friend with
this picture and they got offended.   

Today I am sharing my experiences as sparked by some other peoples' experiences with chronic illness.  I highly recommend passing the links on to anyone you may know starting their journey with a chronic condition, living with a chronic condition or their caregivers as both of these articles are excellent resources.

A drawing I did of myself in the hospital
I try really hard to keep my sense of humor, this is a common
theme with other people going through similar medical situations,
because if you don't laugh, you cry.  

A funny side note: In the open letter, the sign that Catherine Richardson is pointing to in the picture here to the left, is hilarious to those of us who have had this exact sign on many of our hospital room walls. Limitations/Special Instructions: No Food :(  - I have had more times than I can count. I actually rewrote the sign in my last hospital room to read much the same way with the following answers: my doctors - lost track, my goal - not die, and the I am going home - as soon as I poop or fart.  it made the nurses giggle and a couple took pictures of it before they erased it. Oh and the French Braid Catherine is wearing is the perfect hospital hair trick - because you know you will not get to wash your hair for 5-6 days. For someone with my amount of red curly hair - if not tied down my hair can get to epic size before they come hose it down with that itchy no rinse shampoo stuff.

One of the great things I got from the open letter Catherine wrote is how similar our experiences have been, that I was not alone. One of the hardest things to come to terms with is the isolation that happens during chronic illness, another eventual fact; you spend a lot of time alone.

A photo of Catherine Richardson - the author of the open letter.  
A friend pointed out that we looked similar - I laughed and replied,
"well you know us sick girls, we all look alike"

Clean Up on Aisle 6: Portable IV Pumps Are Not All That Portable

Today was the first day on my monthly IV treatment, I usually have an IV line inserted into my central port in my chest for 7-10 days to give me hydration and nutrition and medications. This infusion helps keep me from having so many bowel obstructions and long hospital stays. I have been on IV treatment similar to this for 4 years now. Currently I use a CADD prism portable IV pump; that pumps continuously for 24 hours at 100 ml/per hour. Now believe me portable is a misnomer, as you are never really portable with an IV line in your body even with a tiny IV pump that rides inside a rolling bag you are seriously limited in your movement by the tubing that is connected to your body. So it is difficult to go anywhere out side the home, but we had to be at a doctor's appointment. The pump, Power pack and huge bag of Saline (which holds 2500ml is housed inside a backpack that was configured to ride in a converted R2D2 rolling carryon bag. I am very used to using the CADD pump and I started using it because it is superior in safety for me as a closed system. This pump provides a continuous flow over 24 hours with far less chance for air bubbles to occur in the line and less reason to open the line to possibility of infection. With older stationary pumps, you open the line every time you have to change to a new IV bag which with the standard 1000ml bags meant 3 opportunities for infection a day. The high volume tubing on the CADD pump allows for needle-less access in giving meds during the infusion, I no longer have to stop the pump and open the line to inject medications; again this provides less opportunity for infection. These pumps are designed to be portable, they are programed by wifi connection and the data is monitored by your doctor in real time during use from their office while the patient is at home. For most patients who have to have on going infusion treatments, infections and exposure to the bacteria in a hospital setting is extremely dangerous and being able to get treatment at home is not only safer but much less expensive. For me, the hospital is a very dangerous place to be, the infection risk is very serious, so we do as much treatment at home as possible.

Me and My CADD Prism IV pump housed inside my
converted R2D2 rolling carryon bag. We chose this
bag because it is hard sided and holds the system upright
in the best position.The ultra light 4 wheel carrier it
rides on is super strong and functions like a cane when I
need balance and support. If you have to walk around
with an IV pump it, you might as well have it look and
sound like R2D2.

I have always thought of the CADD pumps as virtually bomb proof - super safe and so easy to operate. So easy and safe that I started to forget the potential dangers of having an IV infusion entering just a few centimeters above your heart valve. The port is so simple and clean you forget how close it is to your heart. Today, I learned what a catastrophic failure in the high volume CADD cassette tubing can do to you in a very short time frame. I was nearing the end of my first 24 hours of infusion and had to accompany my husband to doctor's appointment. The medical office was very close to a local military base and we decided to stop at the commissary to buy our groceries.  For those of you who are unfamiliar with shopping at a commissary on a military base, it gives you about a 1/2 price discount on your grocery bill and for us that is a huge deal.

As we enter, I feel a little dizzy and I am trying to manage my rolling IV pump in my right hand and holding my service dog's lead in my left. Having the IV pump and my service dog at the same time, makes riding in a scooter provided by the store impractical. It is easier and safer for me to try and walk when I have both the rolling pump and my service dog. Jeff and I both agreed this would be a short 'surgical strike' into and out of the store taking only a short time. We were both already exhausted but we were also out of milk, and eggs and just about everything at home so a grocery trip was a must. Even though we were both wiped out from the doctor's appointment we decided to take advantage of being so close to the commissary; where we can get our groceries for 1/2 the price. Because I could not ride a scooter when I have both the IV pump and my service dog to handle, we try and do the shopping as quick and with a little walking for me as possible. I learned the hard way how riding a scooter with the IV pump and a service dog can trigger bad things to happen, as I forgot I was tethered to my pump and stood up to reach for something and almost ripped the line out of my body. So now when I am on the IV pump - I choose walk no matter how much it hurts and that is why Jeff reconfigured my IV pump's case to attach to an ultra light 4 wheel carrier that rolls well and acts like a walker to help support and balance me when walking

The IV tubing comes out of the
top of the case and is secured to
handle to keep it safe and out of
way of catching on things.

A few minutes into the store and I start to feel dizzy, which is not uncommon. Ellie is starting to alert me but I don't quite understand what she is alerting for because she is reacting in obedient disobedience. This is a term when your service dog alerts you to a change in your body chemistry by disobeying direct commands that you know they have mastered. They start to disobey the simple things that you both know they have mastered. It usually denotes a big change in body chemistry or that something is bad for them as in they are feeling sick and need to run outside to go potty or throw up. Either way it is an urgent alert. I took a moment to check in with myself and I was within my normal pain and dizziness; nothing that out of the ordinary. I give her the, "we are good" reply and ask for a touch confirmation on my hand; which she does. This set of commands and actions, is our way of checking in with each other. Then I gave the, "back to work" command and we continued. Jeff and I decided to split up and do double duty grabbing items so we could get done faster but we always stay within one aisle of each other in case I get into trouble walking or need assistance. I was half way down the aisle to grab something and Ellie does a major alert; as I command her to, "watch my back" she ignores me and does a crazy ivan. Ellie whips around in front of me and gives me her "pay attention to me bark". Now as her handler, I understand this disobedience as, "we got to get out side fast mom!" I think she needs to get to the grass in a hurry to potty or vomit or something. I know it is a very urgent alert and we drop everything and move to the exit door.

As we are clearing to the exit, Ellie is pulling towards where Jeff is the entire time on the next aisle over which is weird because normally she should be hauling ass to the exit to make it to the grass area for relief. We get to the front door and I am now so dizzy, that I am wobbly on my feet and catch my balance on my pump handle and the edge of the security check desk. The agent at the desk asks if I am ok and then points to my IV line. I had it threaded under my shirt, and under my sweater so it was as visible and not so freakish while out in public. The port part still sticks out above my collar at my neck where it enters my upper chest. At the hem of my shirt the line continues to connect to my rolling IV pump. I look down to see my line has backed up with blood all the way from my port, down through the 14" extension line and into the entire length of pump tubing all the way into the pump case. The entire line is full of blood. I have never seen this happen on a CADD pump. I have seen it happen on a gravity line when the IV bag is below your heart and the pressure of your blood is higher than the force from the gravity level on the IV bag. But this pump relies on a pressurized closed system and it should never back up like this especially when there are two anti-syphon valves on the tubbing to prevent blood from pushing into the line. The agent sees the blood in the line and freaks and calls for security - which on the base means MPs. I know I have to lock off the lines and flush the blood back out immediately and I explain to the agent I have to go attend to the line and head to the restroom. There was no other private area to address the issue close by so the public restroom was my best option.

A closer look to see how the pump the power pack and
the full bag of saline holding 2500ml fits all strapped
into the special back pack. The high volume tubing
connects to the bottom of the pump and is securely
locked into place with a turn key lock. We know it was a
defective cartridge that caused the blood to back up down
into the tubing to the bag. When functioning normally the
system is closed and vacuum seal and pressure from
the pump force the fluids along the line and into my port
and into my artery. 

The restroom is small with two normal stalls and one disabled stall and filled with 4 gossiping employees on break. I 'have to wait for the able bodied person to clear the disabled stall because that is the only stall out of the three that is big enough for me to set up any kind of 'semi sterile field' to pull out my saline syringes, heparin and glove up to handle this while putting my service dog into a sit. The person in the disabled stall is taking too long and I have to act now - so I corner my self on the furthest sink and lay out a portable semi sterile area and start to work clearing and locking the port line. Of course whipping out a pile of medical supplies which look like large syringes freaks out the ladies taking their sweet time gossiping in this tiny bathroom, but fuck it; this is my life and my blood in this IV tube so I continue. The gossiping ladies leave immediately. 

I had already closed the 4 clip locks on the line to stop anymore blood from flowing out into my tubing. As far as I could see the blood had traveled all the way up the line past the pump and into the bag. I opened my line and capped off the pump side tube now full of blood and coiled it inside the back pack of the pump so it would not be out in the open. Then I pulled out three saline syringes, unwrapped, primed out the air and flushed them into my port line; anytime blood gets into your port line you have to flush it back into your body or it can cause a deadly clot to form. Because I use a 14 inch extension on my port line, I have to flush at least 30 ml back up the line to make sure all of the tubing both outside and inside my body were clear of blood. Once I get the line clear and full of saline of blood I have to follow the saline with heparin to safely lock off the line. The saline flushes the blood out, the heparin keeps any residue from clotting or trying to clot so the port line stays open and viable. I did this all in a matter of seconds, maybe a minute max - I was in hyper terminator mode with one mission: to clear, clean and lock down my port line.

The location of my central
veinous port is just below
my right collar bone, so the
bandage covering the needle
almost always visible.

Then I opened my pump backpack, and saw that quite a bit of blood had emptied back into the IV bag. My daily iv bags are huge - they are meant to hold 2500ml and we were nearing the end of my 24 hour infusion period, which meant I had about 400 ml of saline in the bag and what looked like 1200 - 1500ml of blood now inside the bag. I have never seen this before, I have seen my blood crawl up the line a start to go inside an IV bag but never fill one. At that point I lost my cool a little. To help put what I saw into perspective the largest blood test tube holds 10ml. I had bled 100 times that amount into this bag, and it had happened in a matter of maybe 15-20 minutes. A properly functioning CADD pump has enough pressure inside the closed system to prevent blood from my arteries from pushing back into the tube, and when the pump detects resistance to pushing the saline forward it sounds an alarm to let you know there is a kink in the tubing or something interfering with the normal flow. There was no alarm, and the pump was allowing the blood to back al the way up the line. It effectively had become a motorized drain into the emptied space of the IV bag.  

I had checked my pump to get my reading on the amount left in my bag before we entered the grocery store, before entering the store my bag was at 382ml of the normal clear yellow fluid. It would take the IV pump nearly 4 hours to move 382ml of saline into my body. My IV bags are injected each morning with a multivitamin which color it yellow. Now the IV bag was bright red and reading at 1800ml, that is almost full again. I texted Jeff finish grabbing the groceries meet me with the car keys at the front cause I needed to go to the van. It is not uncommon for me to have to go off to the bathroom to find a private place to give myself medication into the IV line or flush the line. It is also not uncommon for me to get too tired to finish a shopping trip and got sit and wait in the van. Jeff had not seen the blood in my line and at this point had no reason to worry. I was still in the mind set of "we are here, just finish the stupid shopping and go home where I can figure out what is going on with this pump". I was not really thinking clearly enough to understand the possible consequences. Like I said I have been using a CADD System and I have never seen or heard of blood back up the line. I have been on other IV pumps or gravity lines and seen blood crawl up the line in regular treatments both at home and in hospitals for the past 10 years. But I have never seen blood push this far up the line, this fast. I exit the restroom expecting to see Jeff with the van keys. Instead I the security agent, the store manager, all the gossiping ladies from the restrooP, a pair of MPs and an EMT crew is rolling up.

Long story short: I sit and let the EMTs examine and confirm I have cleaned, cleared and successfully locked my port line and I have turned off and locked off my pump line and stowed it safely away inside the back pack. I initiate a three way phone call with my Home RN who confirms she will meet me at my house and gather more vitals and help test the pump and if necessary will assist me to get to my local ER. The last thing I wanted was to be heading off to a hospital away from home. My vitals were stable and with the assurance of my home nurse I left with Jeff to go home. My nurse was waiting in my driveway as we drove up. When i sit down and show my nurse the pump and we do a three way call with the pharmacist at the IV supply company about the pump and ran the diagnostic over the phone. All of us thought the problem was a defective high volume tubing cartridge or a problem in the pumps ability to engage with the tubing. This is the only way the pump would allow a system designed to flow only one way to back up and flow freely the opposite way.

For prospective to give you an idea of how large the IV bag is,
it holds 2500ml, that the 2 and a half of the normal big bags
you are used to seeing hanging on IV poles at hospital. When
full the bag is roughly 12 lbs. The IV bag is so large we
refer to it as the baby and say, "it is time to change the baby"
when we start to change to a new full IV bag every 24 hours.

We rebooted the pump and reloaded a new sterile bag, and primed a new cartridge of high volume tubing. We tested the pump and after the reboot, it worked perfectly. We re-examined the IV bag and figured out I most likely only deposited 800ml or so of my blood into it, which is still really scary to look at when you pull out a giant saline bag and it is a bright red. My IV bags are made for a 24 hour continuous flow of 100 ml per hour so the bag is huge; not like the 1000ml bags most people are used to seeing in hospitals. My IV supply company is a great and they reset the programing on my pump so I could get through tonight and will deliver a new one to switch out at 8am tomorrow, just to be doubly safe. Once we were satisfied that the pump was working properly again and that the culprit was a most likely a defective tubing cartridge, we reset the whole system. My Home RN drew blood to test how low my blood volume had dropped and we will test again in the morning to double check. If my hemoglobin drops below 10, I have to go to down the street to my local hospital to 'grab a couple of pints'. Finally we flushed, flashed and flushed my port line again, changed a new sterile extension line and reconnected my port line back to the pump line.

The best parts of the story - 

• Jeff had already started checking out with the groceries before I got ambushed by the team of folks at the front door, so we did get our grocery shopping errand done. Hurray for multitasking!
• Secondly, I have now sufficiently scared the shit out of everyone who works at that commissary - I also bet no one will ask if my R2D2 is a 'oxygen pump' anymore. 
• Third, the sight of blood freaks out every one universally, but when it is coming out of a tube in your chest it scares the shit out of people. The security agent actually asked me if I was wearing a rosary, the IV line was so red he thought I had on a rosary under my shirt. when i lifted the line to show him no it was a port is when he realized it was a blood filled tube in my chest.
• Fourth, people will ask to pet your service dog at the most inappropriate times no matter what, when I was sitting on the gurney talking with the first responders, some random customer interrupted our conversation to ask if they could pet the puppy . . . I said, "No, not right now."
• Lastly, and most important - this is exactly what I mean when I talk about how my service dog has saved my life. I was feeling a little dizzy and exhausted which is what I consider normal after going to a doctor's appointment and doing a short stop at a grocery store. My energy and stamina are almost nil these days, and feeling tired and dizzy are so normal to me that I no longer think of them are a warning sign. If my service dog had not alerted me and kept on alerting me even after I commanded that "we were good", I would not have noticed the blood in my IV line as soon as I did. Her "obedient disobedience" as a high level urgent alert is what made me stop and walk to the front door. Had I not stopped and acted on her urgent alert I might have kept walking in the store. I might have kept feeling dizzy and lost a lot more blood and worse. The pump was malfunctioning so there was no alarm to alert me that there was a problem. I was wearing the tubing under my shirt, under a sweater and it would have been easy for people not to notice that there was blood in my IV line as I was walked by them. It was Ellie, pulling on my leash, mouthing my hand, giving me a "pay attention to me bark" and her disobeying my most simple commands which alerted me that something was really, very wrong. Ellie, my service dog, saved my life again today.

Ellie, my service dog, she is a doberman/lab mix. She was rescued off a highway when someone threw her away as a puppy and then she got paired with my and we trained together for over a year and a quarter in Operation Freedom Paws program. We still attend training even after passing our public access test because the training never really stops for either of us, part of being a successful team is learning new tasks together as my medical condition requires it.

Ellie and I at an infusion center, she goes with me everywhere, in medical
treatments and tests. The only place she cannot accompany me is into a
sterile environment like an OR suite, but she will be with me before and
after in recovery. 

I am ok now. I feel dizzy and weak from the blood loss. My vitals are stable and the test tomorrow will determine if I have to add more blood or I can just rest and recover. I have ten years of experience with IV infusion treatments and this is by no means the first time I have seen blood run up my line. It happens often with a gravity lines when an IV bag is hung too low. And I have been in a lot of situations where trouble happens with a IV port line, so I know that the first thing to do is to lock off the line, get some where safe to clean it, clear it and lock it. Which is exactly what I did. I also know the public bathroom is not the best choice but when you are in the middle of a store it is a better choice than the side walk, the produce section or fainting while trying to get to the van. In the past while on a different kind of IV pump that required me to disconnect my line to walk to go to the restroom, it was 3 am and I got up to use the rest room realized I felt something warm running down my leg. I was so exhausted that I forgot to lock off the line and bled all over the myself, the bathroom looked like a murder scene. I lost a fair amount of blood that night by accident. When you have an IV tube in your body off and on for a few years, you learn not to panic when stuff happens and you just figure out how to fix it.

My service dog Ellie, is my lifeline and my ability to go
into public, without her by my side; I feel like a
piece of my body is missing.

When people stop and ask me why my service dog needs to go everywhere with me, or why is having public access for me and my service dog so important, this is one of those examples of why. Had Ellie not been next to me and alerted me about the blood in my IV lines, I could have had a very serious medical crisis, one that could have done me serious harm. Ellie alerted me, and even when I was too dense to listen to her, she kept alerting me by acting out and disobeying me until I understood what was wrong and then could act to prevent more damage from occurring.  To alert me she has to be next to me and that is why it is so important for my service dog to be with me at all times, everywhere we go.

I always say Ellie feels like an extension of my body, that without her beside me I don't feel whole. She and I are a working service dog team; four paws, two feet, one team.

Ellie and I, together in training class at Operation Freedom Paws.  

Warning Vent Ahead:

Today I had to block someone from my Facebook page, it is of no consequence who they were because they did not have my best interest or the interest of those I love in their minds and their intent in their comments was to be hurtful and I don’t have room or energy for people like that in my life.

Ellie and I after I was released from ICU
- with Septic infection in my bloodstream.

There is no doubt I live with a very serious medical condition.  I have more medical records and test results from the past 15 years that most people accumulate over their entire lives.  My condition is real, proven and something I strive to live with in a positive way.  There is no way to fake blood tests, Sepsis is pretty straightforward life threatening infection and hospitals don’t let you hang out in them for fun. When I am in ICU it is for a reason. That IV line that connects to my body every month is real and I don’t pull that IV pump around for giggles and grins, it saves my life. I would not wish the level of pain and anguish I have lived through with my medical treatments and condition on any other person.  My condition is terminal and I will go through an eventual decline that will continue to limit my abilities to do things and that is my reality and it sucks but I know that it will come and that is why every day for me is precious.  Every day I awake to see my handsome talented husband, and our beautiful service dogs is a glorious day. 

Ellie and I getting another week of infusion treatment

 

Ellie and I post op - following the surgery to get my central port.

Some years ago I decided to be open and honest about my medical condition, I blog and write about it in great detail sharing experiences of hospital stays and pictures of intense treatments. I share this to help people understand what we as a family live with and to help others know that even when things seem bleak there is always something positive to hang on to in the darkest hour.  Pain in my life is a constant and it does effect my ability to do some things and it does wear on my emotions but it does not rule me.  Pain ebbs and flows, up and down, back and forth and I float along in it like the waves of the ocean. Some days the waves crash and pound my body against the rocks and other mornings I float along smooth as glass.  But the pain level is not what is important ever. What is important is kissing my husband good morning, holding his hand when mine is trembling, feeling his hand on my back when I cannot sit up, the softness of Ellie’s fur in my fingers and the love in her big brown eyes when she lays her head in my lap.  Those simple acts of love matter more that anything else and that is what is held on to during the pain. Pain is an electric impulse through a nerve bundle and it has no malice for me it just is part of what makes me a stronger person.

My Portable IV pump - it fits inside
my R2D2 rolling bag

My IV line attached to my central port and
connected to my portable pump inside R2D2.

So when some one asks me, “how can my husband and I travel to places and scuba dive if I am disabled?” I get livid.  Disabled people do all manner of things.  Scuba just happens to be what is sacred to us and it is so because when we are under the water we feel strong and whole in our bodies the way we used to before our illness and injuries.  I dive because it makes me feel normal for 1 hour at a time.  It is same reason Wounded Warriors and other Non-Profit organizations help disabled people learn to dive so they can feel that sense of freedom again with their bodies.  I am blessed to know disabled people who win buckles in national Rodeos; I am honored to know disabled people who race cars, run the rapids in kayaks and sky dive.  The difference when a disabled person does some adrenaline type sport it takes more planning and modifications of the equipment.  But life for a disabled person takes more planning and modification. That planning and modification does not make what the person is doing any less spectacular or the person less competent, frankly it usually highlights how remarkable the spirit and strength of heart that person possesses.

Isla Mujeres - Cliff of the Dawn - and one of the most
beautiful and healing places for me.

So when someone implies I should not be celebrating the 5^th anniversary with my loving husband in a tropical island where we can go scuba diving because I am disabled – I tell them to go pound sand and block them from my page.  We save and scrape our pennies all year to make that trip and we are not going to expensive places; we go there because it is mystical and magical and filled with other people we love. Our family dinner downtown on the island, I had my favorite thing Lima soup for 60 pesos or 3.29 USD.  Our hotel room cost less on the island with every meal and drink included than a Best Western room costs here with nothing included not even a bottle of water.  Again, we go to that island because it is not about the money – it is about the wonderful people there whom we have worked with for years and who care for us like family.

We dive because it makes us feel whole - and we are lucky to
have made friends with great dive masters who understand
how to accommodate our conditions so we can dive safely.

My husband knows more than anyone else how many times a doctor has expressed how little time I have left, or how awful the later parts of my decline will be.  My husband more than anyone else understands that I have surpassed my medical expiration date 5 times and I have coded and come back 3 times.  My husband has been the one pounding on my chest breaking my ribs to get my body to breathe again, and he has held my hand when there was non one there but the sound of beeps from the machines.  I will go back to that tiny little island every year to celebrate our love until there is no way to do it.  I will grab my IV pole and roll it onto the plane and through the airport and on that damn ferry until I can no longer.  Because there will come a day went I can no longer make that trip and will only have the pictures and the memories.  I will not apologize for living what is left of my life to the fullest and for spending each day with a smile on my face and making great new memories in my heart. 

We are as goofy underwater as we are on land -
Life is short, so we fill it with laughter.

 My husband is a damn honorable, talented and huge hearted man.  He spends his life giving back to others, helping others to give thanks for how he himself was helped. I have seen him go do this work with his hands trembling from pain and come home in total agony, but again it is not the pain that matters. What matters are the people, who he connects with, who he can help on some level and who through helping them heal his own soul.  I try and help whenever I can and I will until my dying day. Because that is who we are, it is no trick or game; it is who we are and what makes us happy. We are blessed to have found and be a part of similarly thinking people who get it in their bones that in helping others you refuel your spirit and heal your soul.

Another view of the waves at the Cliff of the Dawn -
To the Mayans this was a sacred island where you
came to heal . . . I kinda agree with them.

So I blocked the idiot – removed and deleted any and all nasty posts he said to me, because the time I got left will be spent positively, in service to my community and in making this place better than I found it in any way I can for as long as I can. As I see it there have been multiple changes for me to have been ‘called home’ and each time I awake and come back so someone in high places still has work for me to do and I will keep doing it until I am done.

For those who don’t like it – don’t let the door hit ya on the way out.

 

Jeff and I, exhausted after a dive.  Yes it is hard for us to do it but the memories
are worth it. I can tell you when I have those weeks ing the hospital and things
are real tough, these are the pictures and memories I hang on to, and fight
so we can go back there and make more memories.

The white sands of North Beach on Isla Mujeres - with some of our greatest joys and passions, the work Jeff does with Operation Freedom Paws, paw prints for our service dogs, and the Rolleflex camera and the love we share around all of it.

It Is What It Is; Almost By Definition

So I don't know how to express this - so I am just gonna let it fall out. I have been alone quite a lot since going to the hospital in February. Being alone as a sick person is not unusual it is in fact the norm most of the time. When you are sick you spend a lot of time on your own by yourself. You are alone in the hospital, you are alone at home, and now even when I am out in the world I am still alone; alien to the rest of the world around me. This last crisis of illness has been particulary hard, in terms of the loneliness factor. It was arguably one of the more difficult medical hurdles to overcome in the past few years and the treatment was unpleasant in the best moments and really damn painful most days. 

Just got out of ICU with second case of Sepsis,
I spent little over 4 weeks in the hospital and then
another 20 months in home nursing care.

I have had serious sepsis 3 times now and each time it kills off a part of me, the first time it took my intestines and my marriage, the second bout took a gaping whole in the muscles of my abdominal wall and my dreams, this time we were scared it would take my heart valves not so far it may only be a kidney or so. I don't know all this bout will be lost but I know part of my souls has gone along with it. This bout has been hard And I was and am alone a lot. I have Ellie of course, my service dog and trust me if not for her I would have gone crazy pounded my head against doors (and if I did that a little she is not gonna tell you). Ellie has been the unconditional love wrapped in fur that has given me reason to go through one more day. She is on many occasions the tether to me to stay in this fight. During this infection sepsis craziness I began a slow, stumbling melt down into a really dark hole.

In recovery from Something -
you start to loose count

It happens, my therapist says so. It happens, you get close to death medically and you think about it, you think about it a lot, you calculate the medical bills, if it would better if you were not here making more medical bills and you debate which is better to be here or just to slide under the waves. It happens, it is normal, and it is part of the processing of being really sick; and it sucks. I am a positive person, considering the amount of medical crisis I have been riding shotgun down the avalanche for during the past say 15 years, I tend to classify myself as really freaking strong and positive. 

Ellie and I in the hospital: heaving her with
me is how I get through it all

But as much as I long to be a walking motivational poster, or wise sick person who em parts the wisdom that only comes from standing on the edge of the knife over the abyss; I have my bad days too. I have more cracks in my armor than can ever be repaired and wholes in my soul which are slowly filling with the puddles of sorrow.

Lately I have noticed I don't feel like I fit in anywhere any longer, like I have been sick too long to be normal. Walking around with a rollingIV pump does not do much for the fitting in part and the stares and questions I get if I manage to walk into a Safeway are all pretty invasive and demoralizing. Everyone stares, I am used to that even without my little rolling Iv pump - cause everyone stare with me with Ellie. Only now they don't ask if I am training her - they can tell that she is my service dog, my illness is in no way invisible. So the staring is a little different, it is more filled with pity and even suspicion some times. Mother's pul their children away and to the far side of the soup aisle squeezing their little bodies up against the cans scraping their little faces along the campbell's line up as they try and side step by single file as far from me as possible just in case my terminal might rub off on them. One poor little girl who really wanted to pet Ellie got yanked into last week by her mom who screeched that is a service dog for a really sick person you cannot touch it. I just stood there and let the egg of that comment run slowly down my face and splatter on the floor in front of us. 

One of my first first really big hospital stays for yet another
bowel blockage,it was two day before Valentine's Day
and Jeff brought me this huge flaming heart ballon that
sang Hot Stuff every time you hit or moved it. At first it made me
resemble a parade float but it came in handy when the
morphine made me start hallucinating on day 3 and I kept trying
to escape. It is hard to get away when you walk like a snail
with a giant pole and a flaming ballon that sings hot stuff.
It is no a tradition for me to get singing balloons in the hospital
always tied to my IV poles.

We have had visitors, and that is nice and hard sometimes, because I don't have much energy; so I get tired and don't want to be rude and say I need to go lie down. But more so I just don't feel like I belong in the world of the living much any more. I can handle the isolated run to a doctor's office, that has a real purpose and I still fit in those places. The trip to walk to the yogurt aisle of Safeway, is usually more for Ellie so she can feel like she worked today - or at least that is how I work myself up to do it is for her. Cause if I keep forced on getting her in and through it then I don't have to see the stares and pity and fear. I just feel like the is not a spot for me in the world out there any more, I know that sounds weird . . . but it is what I am wrestling with these days. I have been down and out of it for nearly 5 months now and by all accounts I got at least a few weeks of slow recovery from bed rest to go. by all accounts this last medical crisis has been tough on me and prolly more so on Jeff. 

Ellie and I do CBT breathing exercises and
meditations to help cope with the pain

I used to be a highly social person - I am the type that recharges by being around and interacting with and talking to people. but hers of illness have changed that in me. Because to be sick is to be alone it is just what happens. So my battery does not recharge much any more, that battery of my soul that got it's spark from laughing with others and telling stories and being in the social action. that part of me is turning inside out, I am not experiencing panic attacks when I go out and I am around crowds of people. I want to crawl inside myself and pull my eyelids shut like the rain flies on a tent. 

Ellie is a damn good service dog and one of the reasons I am still here:
Sometimes we we just rest.

I get anxious around people now, nervous when they approach and I back away when they ask about my dog or my pump or what ever. and the whole while I feel like I have unplugged from myself and I am hovering over looking down on the whole scene from across the room watching my disassociated body moves through space and I float behind in this invisible version of myself as a parade float. Maybe it is because I don't seem to have a purpose other than get well, ok I am working on that I am working to get well, then what I will just have another medical thing and I will have to get well again. it all seems so weird, so foreign, so not me.

Me going through a 6 hour Iron infusion. this was my first major
 iron infusion after learning that my lack of absorbing Iron or B or
any vitamin for that mat err was not happening in my GI Tract.
I had been hospital led 2 weeks earlier for a hemoglobin of 5.8.
I also found out that the years of vitamin deficiency had damaged
my bone marrow so I was having great difficulty making blood.
When you receive Iron is is stored in your bone marrow and makes
the marrow swell inside your bones. This is why large dosages of
IV Iron can cause bone pain. At this point the doctors were giving
me mega doses, 650ml.On the first couple rounds of this I was
fine because with the loss of bone marrow my surviving marrow
had room to sweep inside my bones.  After I had a successful
stem cell transplant which helped me restore some of my lost
bone marrow, the next round of mega dose iron made the new larger
quantity of marrow swell inside my bones and it caused intense
agonizing pain as the marrow swelled and pushed on the
bones it causing the bones that hold the major deposits of
marrow to fracture from the inside out

I started all of this my saying I don't know what to say and I still don't, and much less do I understand why I feel so alien from the world. I just do, it is what it is; almost by definition.

Let me make clear that this is not a condemnation of not getting enough visitors or anything like that. Nor is this a pity me plea, or a cry out for people to come rushing to the house to cheer me up, it is not anything like that. And know that if people did run to my house I would most likely hide from you, too scared and weirded out to come out to see you. This is just the stark realization that I don't fit anywhere comfortably right now and that feels real empty and weird and alien and I don't know how else to explain it.

My enthusiasm for being told I would spend the summer in a body brace
cast thing to help my bones heals after mega doses of iron and swelling bone
marrow fractured them from the inside.  

Ellie doing what she does best, making the pain less and the love more.