I apologize in advance, for the long post, but I wanted to get caught up so I can continue with updates more recent.

My gastroenterologist (GI) was at a loss when it came to managing my decreasing motility of my large intestine. I had to visit the ER at least once a week due to intolerable pain. The x-rays taken there, all showed the same picture and over time, my doctor was able to see everything over a large time frame. It was then that he realized the severity of my lack of intestinal motility. After we ran out of options he was able to offer, my GI went searching through his co-workers and found my new interventional radiologist (IR), Dr. Osnis. It was then that I was presented with the c-tube treatment plan. This is the first time I had ever heard of a c-tube, or a cecostomy tube, and I usually know quite a bit about all options for any digestive problem now that my motility and paralysis is progressing.

The other posts I have blogged here, show the detail in research I do in order to fully understand the concepts, procedures and the life I would live after starting/completing treatment. I stress the importance of almost obsessive compulsively researching when it comes to your health and illnesses/diseases. You must NEVER put all of your faith and trust into any healthcare professional. After all, they are people too and people make mistakes and they can’t be expected to know everything. Placing medical caretakers on some sort of pedestal can seriously compromise your health and be potentially fatal. An example of this will be given later. Yes, it happened to me very, very recently, through no fault of my own.

I think the last time we all talked was when I was in the middle of attempting to control my lower digestive system with a c-tube, or tube placed in my cecum. Wow, that was way back in August of 2012. So sorry it has been so long. Anyway, it is the same tube concept of a jejunostomy, just placed in a different area (the cecum; the first section of the large intestine). I had a long tube with a continuous drain placed first. As with all other tubes, the longer tube was placed first to establish a healthy tract built up of scar tissue. This assures that the tube, should it become dislodged or otherwise dysfunctional, can be easily replaced. It also helps reduce any pain that might be associated with manipulation or tube movement.

I agreed to the c-tube and had it placed through the standard outpatient procedure associated with any tube placement. At first, the long c-tube attached to a draining bag, was working really well. I was seeing results. The drainage bag was filling with air on a constant basis. This was precisely the purpose for which it was placed. But then, it didn’t seem to be working. I became afraid. I have been here before, the place where you know something is wrong but can’t produce evidence that would support your feeling. I made many visits back to my IR to have the tube checked and each time, it showed the tube to be functioning correctly. They pushed contrast through my tube that would show up on a special type of x-ray. I saw it myself. But when I’m home, nothing comes out of my tube. The draining bag was sutured open. The valve wasn’t broken. Why wasn’t it working?

I stopped getting relief that the tube was placed to offer. The tube my IR placed was only a 8.5FR (FR = French, a unit used to measure the size of tubes = How tubes are measured). I didn’t understand why the tube was so small. For as big as my distended colon was (10cm at the biggest!), I felt the tube should have been bigger. Once my tube site and internal tract healed and was strong enough to withstand a tube change, I requested my long tube be switched out for a low-profile tube as well as a larger tube. It took a few weeks for my tube that needed to be specially ordered, to be available for placement. I received a 16FR Mic-key button to replace my 14FR tube. I thought that with a shorter tube in length, on the inside, coupled with a bigger tube, I would find a constant and greater relief in my symptoms. This, I believe, is where I left everyone last time I blogged.

I began my routine from before, visiting the ER every week for abdominal pain. The x-rays looked just as bad as they did in the past. Throwing his arms up in the air out of frustration, my GI referred me to my new colorectal surgeon. This man is amazing. The best bedside manner I have ever experienced. He treats every patient like his own child. This has been said before about so many other physicians but in this case, it is the truth and best way to describe this man. He knew that if my GI, an extremely skilled and knowledgeable doctor, sent me to him that my GI had to be very desperate and concerned. Turns out, my new colorectal surgeon would be the right person to offer the right treatment. Looking back now, I could not be happier with the decision I made to agree to the proposed treatment/procedure.

When I saw my surgeon, Dr. Bastawrous, he told me that he would NEVER suggest a c-tube. He told me that a c-tube is by far the worst idea. I wish he was around when I was having the c-tube placed. I could have bypassed a lot of pain and a few surgeries. He didn’t know. In any case, he said that given all the x-ray images, symptoms and other illnesses, there was really, only one option left. An ileostomy.

There were two different types of ileostomies that we were considering and in the end, I decided to do what was less invasive. An open ileostomy. Exactly what this is, how it works and what different types of ileostomies are available will be discussed in a new section under experiences once I am able to get all the information collected. I think people forget to investigate all possible options when it comes to treatment. They are blind to those treatments that are least invasive. As you can see through my experiences and blogged entries, I started with the least invasive treatments from the very beginning, giving them a fair shot. First I started with simple diet changes. I moved from diet changes to medications to temporary feeding tubes to permanent feeding tubes to PICC lines to ports for TPN to c-tube to ileostomy. As much as the c-tube did not work, it was still worth my time to investigate and in some instances, try. Even the type of ileostomy I have isn’t exactly permanent. In some future situation where I begin to regain the ability to eat orally, my ileostomy can be reversed. While that isn’t likely to happen, taking out all of my large intestine is a huge shock to the body anyway. Leaving it in place makes sense and being able to reverse it is just a bonus.

Come October, I was taken in for an ileostomy surgery where my c-tube was also reversed during that time. My appendix along with the cecum of my large intestine was removed and the stoma for my ileostomy created. My large intestine was completely physically disconnected from any of my organs. Nothing was allowed to go through it. Everything was to come through my ileostomy. It was a very large shock to my life. I thought I was prepared through all the research I did and conversations I had with other patients that had already had an ileostomy done. But the truth is, you can’t be completely prepared for something that is to change your lifestyle forever. Usually the surgery puts you in the hospital for around 3 days. I had some complications that kept me there for over five. The pain was controlled and honestly, the pain wasn’t very high given the procedure that is done. You know, a large hole in your abdomen that is kept open with part of your small intestine pulled through. Yeah, things will hurt for awhile. Any surgery comes with pain. Sometimes you just have to knuckle-down and take it.

Thanks goes out to the many GP friends I met through Facebook, that came to visit me while inpatient for my ileostomy. Thanks go out to everyone who continue to offer encouraging words. You guys rock! I love you all! We must get together again. Preferably NOT in the hospital =)

Once the shock phase ended, I’ve been living with my open ileostomy since then. Like I said before, it was one of the best decisions I have made and that has been presented to me. That is, beside my port and TPN that saved my life and allowed me to get to an acceptable weight (with any illness or procedure, my weight drops back down into the red zone) and stable health. I haven’t had ANY complications, infections or pain in or around my stoma/ileostomy. Aside from a few leakage problems that were due to products that weren’t right for me, I’ve been living relatively comfortably. The products that I have found to be best for me, are the ones made by COLOPLAST. I’ve tried all of the HOLLISTER products (one-pieces and two pieces with their associated pastes and putty) with no success. All hospitals that I’ve been to have only offered Hollister products because they are not a financial burden (e.g. cheap). Once I got home, my HHC that is in charge of my ostomy orders, supplied me with Coloplast products.

I wear a two-piece system with a one-click bag that locks on to the wafer or backing. I required a specific setup because of the location of my ostomy site. I have that gastric neurostimulator still. The battery was recently replaced back in February 2013. The battery sticks out of my abdomen. You can see it and also feel it. I didn’t know for sure, if the ileostomy could even be done because of the location of the stoma and the location of my battery for the gastric neurostimulator. Somehow my surgeon, the amazing colorectal surgeon, was able to maneuver around my battery in order to safely perform the ileostomy. Even still, the stoma is very close to the location of my battery making any ostomy bag system difficult to stick to my skin and form a tight seal in order to prevent leakages. It took me a few months to figure out the right placement, the right wafer size and the use of other products to keep in what vents out of my ileostomy. Ever since then, I’ve not experienced any problems with my ileostomy (or anything associated with my ileostomy).

My ileostomy is doing what we all hoped it would; vent gas and material that would otherwise obstruct my large intestine until the pain was so intense I required an ER visit and at times, hospital stays. Random imaging studies confirmed the success of my ileostomy procedure. And for that, I’m grateful. One thing that keeps me out of the hospital is well worth it. The hospital can help me but sometimes, it can hurt me. With a weakened immune system and nurses who do not practice correct sterile practices when it comes to my central lines, hospitals can be dangerous. Even standard and simple outpatient procedures/surgeries have me needing observation in the hospital but I am sent home in order to not make me more ill.

Fast forwarding through the last months of the year 2012, we come to the end of January/beginning of February and I notice a dramatic increase in my level of nausea. A quick gastric neurostimulator interrogation showed the battery to be completely, 100% dead. My GI was just as shocked as I upon finding this information. It should have lasted a lot longer. My stimulator was set at the maximum settings, so we attributed the draining of my battery to be so quick. In order to get my stimulator back working again, I had to undergo an outpatient surgery to have the current battery switched out for a new one. My surgeon went through his original incision to place the battery and I was sent home the same day with very little discomfort and pain. Much like the first time I had the stimulator placed.

Pictures from my first surgery to place my gastric neurostimulator:

Not soon after my neurostimulator battery was replaced, I went back into severe septic shock. I ended up going to Evergreen Hospital through the ER. I had to go to Evergreen because it was the closest and didn’t require an ambulance ride to get there. Evergreen wasn’t my first choice of hospitals to stay in due to previous experiences in the ER, but I wouldn’t have survived a longer trip. As with all other situations involving sepsis and septic shock, I was very much unaware of how sick I really was and can’t remember what happened during the long hospital stay. I am always better off in the end, anyway. The seriousness that comes with sepsis is very real. You are in danger of not making it through another day. The ignorance you experience truly is bliss.

For those who have never been in such dire circumstances must know a few things:
1. Those who appear unconscious can in fact, hear you.
2. Those who appear unconscious also know when you are with them.
3. When those who are close to death do not feel pain.
4. Those who are close to death experience peace that cannot be achieved anywhere else on Earth.

I know these things to be true from when I have been in a situation where I was unconscious and close to death. I heard my doctors and family when they were around. I knew what they were saying about me even though I was unable to see them or communicate with them. I felt a sense of peace that made me unafraid of what might happen next. I was literally a breath away from death and it was in that moment, in that choice, where I had to decide my future. In my level of unconsciousness I heard my nurses ask me to breathe. Having zero desire nor the feeling of need to breathe, I was not afraid should I choose not to breathe. My job here on Earth was not finished; I took a breath. It was at that moment where I left death behind and never returned. This happens each time I’ve gone septic. It is no joke.

The sepsis I experienced shortly after my neurostimulator battery replacement surgery was due to a urinary tract infection (a result of a neurogenic bladder) that went riding through my blood and made its way to my lungs where it settled and caused serious pneumonia. Because it was not based in my port-a-cath, Evergreen doctors and nurses were able to save my port. They added a jugular PICC line with three lumen to use along with my port-a-cath lines in order to infuse a wide variety of antibiotics, fluids, TPN, pain medications, sedation medications, etc. My jugular line was placed bedside while in the ICU. During the first placement, it did not land where it should have landed. After an x-ray confirmed this, I had to undergo a second line placement on the other side of my neck, in the second jugular vein. This time, it found the right way to my heart. I remained in the ICU for a few weeks and finished out my time there on the main floor. Evergreen Hospital was super good to me. I couldn’t have asked for better nurses and hospitalists. I was lucky. They saved my life. A life that has been threatened a few times before.

After my sepsis attack in February, I found myself yet again in the hospital in the beginning of March. The reason for my stay this time is very private and that is really all I want to say about it. If you are having serious problems getting control over your symptoms, send me a message and I can give you another thing to try.

Now I have been placed within a “care circle.” Basically all of my doctors across two of my hospitals came together to discuss my treatments, illnesses and concerns. The goal of this care group was to have one person who would receive all discharge notes, referrals and charts. This allows all doctors to be on the same page when it comes to treatment. Everyone is aware of what everyone else is doing. My new PCP and her nurse took on the challenge to be that person; the person who will manage the actions of all doctors and nurses, both in clinics and through my HHC (home-health company). My PCP belongs to VM (Virginia Mason). My neurologist, cardiologist, hematologist and gastric neurostimulator surgeon all also belong to Virginia Mason (VM). My gastroenterologist of five years and counting, second neurologist, colorectal and general surgeon, pain specialist, and interventional radiologist all belong to Swedish Medical. Swedish Medical Issaquah is considered my “home hospital.”

My latest hospital stay and septic shock episode involves both of these hospital systems. One day not long ago, I noticed my port site to be extremely sore. It is never sore; so I called my HHC (Walgreens Infusion and Respiratory Services) to talk to the IV nurse on call. The nurse I later talked with wanted to come over and check the port site and see if it needed to be re-accessed. Given the amount of pain I was in, the size of my port, the fact that my nurses had to use the same hole to access the port each and every time because it was so small, my nurse did not feel comfortable re-accessing and urged me to call my doctors in the morning to see if they could check it out. The only person I was able to get a hold of that day was my PCP nurse. She suggested that I come in to see her IV nurse for opinion. I did and that nurse suggested I have a new port placed. Following their judgment, I had a PICC line placed for use while I waited for a new port surgery the following Monday. Monday came and I went into surgery at VM for a new port. This was the first time I’d be getting a port from a surgeon at VM (Dr. Neuzil). My last ports were placed by a physician at Swedish. I assumed the surgeon at VM knew what he was doing.

I went home and all night I was in an amazing amount of pain. I’ve had MANY ports before and none hurt like this. I thought maybe I was just being a baby, so I took some Advil and went to bed. I woke up that night more times than I could count. I woke up out of pain. When my husband woke up, I desperately asked for an ice pack, pain medication and my normal medications. I expressed my level of pain to him, but there wasn’t much he could do at the time. After several hours of no relief, I began taking my temperature. I watched as it increased from 101 to 102 to a high 104.3. I started calling all of my doctors and HHC nurses. No one was in the office. Not one person from my “care conference.” I tried to do things by the book. I finally got in contact with my surgeon’s office after my anesthesiologist from the day before, called as per routine. I called his office right away for direction. I didn’t want to call my husband out of work in the off chance the ER would write me off, wasting my husband’s work day. I didn’t have many friends in town. The desk clerk at my surgeon’s office gave medical advice without question, all of which was completely and absolutely wrong. Out of frustration, I called a friend as a last resort for a ride to the Emergency Room at Swedish – Redmond. I still measured at a 104 in the ER and so they administered the first dose of my IV antibiotic, sent a picture of my angry port site to my IR at Issaquah and administered Tylenol in hopes that it would reduce my temperature.

Here is the picture I took of my very angry and contaminated unaccessed port-a-cath site before I had it removed via emergency surgery at my home hospital:

Infected port site

There was question as to whether or not I should go to the hospital that did the initial surgery. Of course I didn’t feel comfortable going back. With my port being infected not 24 hours after placement only meant one thing; it was contaminated before it was even placed. My hospitalists all told me that in their 30 years of being a doctor, they’ve never seen something like that happen. Well, I guess I’m just lucky! As soon as I arrived at the hospital, I was wheeled back into the OR for the emergency surgical removal of my new port. My anesthesiologist and IR team where there waiting for me way after hours. They were amazing. I came out of surgery with one very large hole in my chest where the port and some unhealthy tissue was removed. The hole was so deep you could slip in a whole silver dollar. It also hurt like nothing else I’ve felt. The wound was packed and then dressed with a wet to dry dressing many times a day. I remained in the hospital for a few weeks. Once the contaminated port was removed and sent out for testing, my temperature broke and I began feeling better.

I returned home to continue treatment with a new company, Providence Healthcare, for wound care where they would dress, pack, and re-dress my wound every to every other day. I won’t go into detail but this activity was extremely painful and slow.

My deep wound could not be sewn up in fear of trapping in even the most common of skin bacteria. This would surely cause the formation of an abscess and that would be entirely counter-productive. I also went home on IV antibiotics, as is usual for sepsis discharge. A month after I finished my IV antibiotics, I would be able to have a new surgery to replace my last two ports. This was done just last Tuesday. I was referred to a new surgeon by my GI doctor. He, Dr. Plaskon, is a general surgeon. He also has wonderful bedside manner. I never lost trust in his abilities as a surgeon. I knew I’d be going into surgery with an open wound, that same open wound that nearly killed me. I was still afraid I would have infection problems with my greatly increased risk of infection from my last few surgeries and open wound. I was set to have my port surgery a few weeks back but they delayed it by a week to allow for more healing of my wound. So Tuesday, May 14th, was the vindicating surgery day where I would attempt to, with the help of my surgeon, fix all that was taken from me a month ago. I wanted to forget. I wanted to erase the day that the VM surgeon nearly took my life through his ignorance and lack of skill. He set my progress back by so much, but I couldn’t let it keep me there.

I was just discharged from my wound home healthcare. My wound has closed. It is scabbed and will leave a large ugly scar. But, scars are like badges of honor received after fighting for your life. I will miss my wonderful wound care nurses. They did everything they could to ensure my wound would safely heal and that I was mentally and physically comfortable. They went above and beyond anything I could have asked for when it came to something so scary as my open wound. They were always in constant contact with all doctors involved and even helped me get the relief I needed when I experienced pain. Ever since my Tuesday surgery, I’ve been extremely emotionally sensitive. I truly appreciate every day given to me and everyone in it. I’m frustrated with my lack of energy and how I’m still restricted by that energy. If I push myself beyond the invisible line my body has, I crash. I become sick. I experience intense migraines. I want to sleep but can’t. So I just hope. Sometimes that’s all you can do. Hope to sleep; hope to live; hope for consolation that needs to come.

Happier tummy days to you all!

Destiny be warned. Your grip may be strong, your judgment severe, but we resist you. We have the strength.

Who are we? The broken children. The little warriors.

Alone you may have defeated us. You’ve fought this battle and won since the dawn of time. You are powerful, and, yes, we are small.

It may seem sometimes that you are too strong. That the die is cast. That the ending has already been written.

Not true. We resist.

But not alone. Were it not for the warrior nurse, the guardian, you may have defeated us.

When we are drained the warrior renews our strength. She empties her well to fill ours, and we raise our banners anew.

When we are afraid—terrified—so frightened we may lay down our fight, she pours in us her bravery, absorbing our fear and restoring our snarl.

When in the midst of the battle’s darkest hours our skins get tough and the walls around our hearts grow taller, she steels herself to give us laughter. She swallows our pain to give us joy.

When Kayla down the hall falls after her mighty battle, even the warrior is shaken.

Warrior, we need you still. The fight continues.

Fudōshin!

She does not fall. She returns to her post. Guardian in the night.

Destiny be warned. The warrior will not stand down.

So we, the broken children, the little warriors, will defeat you.

After 5 weeks of my moaning and complaining and very unusal appearance to my husband, he took me to the ER because my less-than-helpful PCP would not schedule me for an emergency appointment (I know they exist). So I had no other choice; I went to the ER. They were skeptical too. “Are you pregnant?” they would ask. Uh, not a chance in … was I pregnant. “Are you willing to provide a urine sample?” If it gets you off my back about it, yes! After 2 and a half hours of lying there crying in pain the doctor comes in with my films and simply stated, “Well, I know why you are in pain.” Thank you, thank you, thank you, thank you – more vindication for me, not in my head. He proceeds to show me my x-ray of my spine and wouldn’t you know it, a completely crushed L1 vertebrae. We hypothesized this happened during my seizure in May and that the muscles contractions during it pulled that bone apart. Painful? Yes…there are no numbers on their scale of uselessness to explain this level to them. “Those injuries hurt really badly.” Hey thanks, I know, what are YOU going to do about it? Well, the position of the break is one where we can do nothing. I consulted a surgeon and he said he could do nothing to help other than offer a body brace (something like a body cast but could be removed when lying down). Out of the humanity in his heart he offered IV Dilaudid which helped a TON. Nothing at home would touch the pain because what I had at home I was already using to make my already present chronic pain tolerable. I attempted to go in for pain help a week later as it was preventing me from sleeping and they gave nothing but IV torodol and benedryl. I’m thankful for that much but would have rather had something for my pain. Instead I got a muscle relaxant and medication for my progressing UTI that popped up that day.

So, I’m struggling. Trying to take it one day at a time, one hour at a time and living for good days that seem to be getting further and further apart. I often wonder if anyone is listening to me and believing in what I am saying when I express pain through teary eyes. With all my medical issues, do I really look like some drug dealer off the street? I have an appointment with one of the most amazing pain specialists in the state on the first of August and hope he can provide me with something else as I know the limits of a PCP or any other specialist are heavy due to the messed up Washington State laws regarding narcotics, as if they have some right to determine who is really in pain and who is not. I’d like to break a few of their bones, give them the throw-up flu and infect their bladder and deny them pain medication and see how long they’d last. Certainly not as long. After tomorrow, I will be finding a new PCP and my wonderful friends on Facebook have pointed me in the direction of the University of Washington. My geneticist is there, so I figured I would give it a shot. I really can’t do any worse than I have with my current doctor.

Sorry if this post is a bit negative. I am very much dreading my appointment with my PCP tomorrow. I hope she has her crap together because so far, she hasn’t. No return on my phone calls or e-mails unless she has something negative to say or something that would make me work harder than is necessary to get something accomplished. Sometimes I feel like giving up but it is people like my GI (Dr. David Patterson) who keep me going forward. He actually called me and asked me to come in. Feeling as if I had done something wrong, like you feel when your father uses your middle name and calls you into his office (you KNOW it won’t be good), but he assured me it was merely a check-up and to review my medications. That is the first time I had an appointment scheduled not by me, but my doctor. It is apparent he is thinking about me and worried/wondering how I am doing. For that I am grateful. In this whirlwind of life I lead there are a few constants, my husband and family, and my GI doctor (who I have been with for at least three years).

Anyway, it is late and my appointment is early. Good night everyone and good luck.

~ Happy Tummy Days!

Why are there all these message boards and forums created by patients? Because we want to forget our problems, for they cannot be solved (for lack of trying by the medical field or for they truly cannot be helped – hospice), and try to help others through their problems, their reaction to the truth of their disease and just to be there for them when they need someone to talk to because no one else wants to listen. There is a definite difference between want and has to, and that was intentional. Most doctors have to listen, but they aren’t really listening because if they were really listening, understanding and believing, they wouldn’t have to listen, they would want to listen. The boards have been very helpful to me and the people visiting my site, e-mailing me and leaving messages there have been amazing. I could not say more about them. No one knows them like I do. The chronic sufferer.

The pain medication I receive acts only to take the edge off my pain. It is enough to allow me to move around as opposed to being in bed all day. However, most people make the false assumption that activity means absence of pain. It couldn’t be further from the truth. When you live with pain for so long, you build up a tolerance to it. I’ve even had this justified by my gynecological oncologist, who said that I was in a considerable amount of pain of which I was unaware.

This was mostly tested when, during my VEEG (testing for epilepsy through in-patient EEG…NOT FUN). They were able to reproduce my grand-mal seizure by slowly reducing my ativan (that I have taken for years for sleep and anxiety) to nothing. Bam, seizure, and a very bad one at that. I don’t know if they did what you should NEVER do, and held me down but all I DO know is that when I came to and asked about it, my back was in excruciating pain way above a 10 on the pain scale of uselessness. They refused to listen or provide proper pain relief medication. They kept telling me that wasn’t what I was here for (referring to my chronic pain). I wasn’t talking about my chronic pain but rather acute pain in my back that made it hurt even to breathe. I even had to wait for them to get a prescription from my neurologist for a HEATING PAD! What is that about?!

They kept me off my sleeping medications but instead fed me Ritalin after 9pm to sleep deprive me as well and once I had my seizure, I was allowed back on them and sleep I did. They immediately diagnosed general epilepsy. My epilepsy neurologist brought up the idea of getting tested for mitochondrial disease. It was something I have been considered for quite some time but with the recent events, it made the diagnosis very plausible. I have an appointment with one of the best geneticists in the state, thanks to a friend I found on Facebook for recommending her. My seizure was strong enough in the hospital to crush the L1 vertebra in my back. If you know where this is, you know it is one of the worst places possible. It hurts to breathe, let alone do anything else. I was given a brace to use if I’m not lying down but truth be told, I am laying down a LOT. I am not a fan. If taking away driving for 6 months wasn’t enough, I can no longer even preform simple household chores. The burden on my husband continues to grow but I hope that once my back heals properly, I can return the favor in some way.

I guess I’m not feeling all that well so it is hard to make or see the positives. This weekend my husband and I are going to the Seattle sympohy to watch them play Disney music. That should be fun and it is in the middle of the day so I should still be relatively feeling better than I do by the time evening rolls around. It is my first REAL outing in quite some time. Just to be out is a treat in itself. Maybe afterwards we could catch some dinner. I don’t eat but I completely enjoy the company. In any case, I’ve rambled on and most of it doesn’t make sense but I thought I would update on the VEEG and upcoming appointments and tests. My issues with my current PCP are for another day. If I commented on it now, I would 100% guarantee things would be said that I would most definitely regret. Let’s just say, I’m on the look for a new one and many of my friends have led me to the University of Washington (where my geneticist is, coicidentally), so I figure I would give it a try. Anyone is better than who I have now.

Thank you for all your support, prayers, thoughts and love through all my difficult times. I read them all and respond when I can. They mean the world to me and you are why I continue to keep my site active. To promote awareness and to give a place to those who may feel alone with a diagnosis that is poorly understood, not well documented, and contains patients who can be countries apart. Should you ever need a listening ear, encourage, or help, I am here for you all <3

Thank you all for everything and I hope you are having a good night watching the Olympic summer trials (my favorite thing to do aside from the real ones held this year in London!)

- Kirby

Good luck to all of you. I think of you often and you are all in my hearts and keep me going. You really are my inspiration for putting my story out to the world for it is by these words, patients become stronger and wiser in their disease, a disease that is so very much misunderstood and often underestimated and even mocked. We have to ban together to make ourselves heard and this is one way I think it can be done. Sharing stories helps us find ways to help ourselves in ways we never thought of before. Continue to read, research, share and post so newly diagnosed or those diagnosed for years but had no one to talk to can find peace in the knowledge that they aren’t crazy; this disease and those it cause are real and sometimes it is us, the patients, that are the only ways to help progress in the positive direction in terms of a cure or even treatment of symptoms. I hope you are all doing well and keeping your tummy troubles at bay as the summer quickly approaches. I hope you can enjoy it with family and friends without the extra burden of this and other diseases. I love you all and think of you often. Keep fighting. Our battle has not yet been won.

I have other news and a new diagnosis, one that some who have friended me on Facebook already know of, but I will explain it in greater detail here and what it all means when it isn’t so late. For now I will leave with a picture. Good night everyone. Rest well! <3

She knew I needed her most – even if I was completely knocked out after three days of no sleep thanks to the Ritalin they made me take after 9:00pm each night…She stayed by my side the whole time. Best dog in the world. My princess.

Love you always and forever,
Kirby

People do not cry because they are weak, but because they have been strong for too long.

This list of 50 Ways to Help a Chronically Ill Friend comes from my old blog and was inspired by the article ’50 Ways to Encourage a Chronically Ill Friend’ on the US National Invisible Chronic Illness Awareness Week website.

Read the Spoon Theory and send them a link if you think they might not have read it. It can be an amazing encouragement to chronically ill people to know that someone else understand their life.

Don’t forget they are sick! Get well cards and gifts dry up pretty quickly when you have a chronic illness, but you don’t get better and unless a hospital stay is needed, it’s easy for everyone to forget that their friend is still ill. If you know that someone with a chronic illness is flaring or is depressed or just because, send them a card or a gift – it’s doesn’t have to be much! Just the thought will make their day.

It’s likely that they will be unwilling to ask for help, but will still need it. If you want to help out, try not to ask “What can I do?” which either invites the answer “oh nothing” or means thought is needed. Instead, think of something you would be prepared to do and ask “Is it okay if I do …. for you?”.

Be easy going guests if you go visit. Don’t expect entertainment, but also be prepared to do things if wanted. Knowing that a guest isn’t bothered whether we go out for the day (it can be nice to take advantage of having someone there to go places you wouldn’t go alone) or whether they read a book or do the housework is fantastic. It takes the stress away.

Preparing food for visitors can be stressful as many chronically ill people will not always eat properly on their own and you can’t suggest crackers for lunch to a guest! Take easily prepared food like fresh bread, dips and cheese/cold meats with you, or pop out to the shops for something. Asking if anything is needed for dinner or offering to pay for a takeaway are also wonderful.

If the chronically ill person has a baby, children or even a dog, ask if they would like a break sometimes. You may not even have to take the children/dog out – just having someone prepared to come round and look after them can mean a decent nap or a long bath can be taken.

If you live locally, easy meals in Tupperware containers dropped off at the house can be a lifesaver…especially if you don’t need the container straight away so it can be frozen. Just make sure you know what they can and cannot eat beforehand! Many chronic illnesses come with dietary restrictions, and these can change with time.

Be flexible and never make them feel guilty about things they cannot do. Chronic illnesses do not give schedules of flares or unexpected issues – we do not know in advance how we will be feeling.

Ask, “Do you have an errand I can run for you before coming over?” “No matter how little you have, you can always give some of it away.” ~Catherine Marshall. Just listen . . . until it hurts to not say anything. And then listen some more. Chronically ill people usually have a lot to get off their chests and often feel they can’t burden the people around them. Let them know they can talk to you and you’ll listen.
If the situation arises, ask “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that our experience can offer someone else hope and that we still have a purpose in life.

Treat them to a gift of movie rentals via postal mail through a service like Amazon rentals. It doesn’t have to cost much and even a few months rental can be a great gift.

Buy them things to cheer them up after you’ve gone. An inexpensive colourful top, a bright umbrella, a teddy bear or cartoon….
Ask them if they’d like to join you for a spontaneous event, whether it’s a local concert, a picnic or just a trip to town. Although it may seem like they cannot go anywhere without lots of planning, if you get them on a good day, then they’ll know then and there they can go!
Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.

Encourage them to make a (preferably online) wishlist and to add anything they find that could make their lives easier. Financial difficulties often go hand-in-hand with a chronic illness and just because we know of something that could help us, doesn’t mean we can afford it! Then encourage other friends and family to check the wish list for present ideas.

Educate yourself. Look up their illness online and if they are having new treatments, try to learn a little about them. It helps to not have to explain every little thing and may well make you understand alot better. Reputable sites like WebMD and Medicinenet are good places to start, but remember that 1, not everything you read will be true, unbiased and completely up-to-date and 2, by the time you have a firm diagnosis, many patients are experts in their own condition(s). Don’t use your knowledge to try and correct the patient – they may simply be more up-to-date with research than whatever you read. Educate yourself and only educate the patient if they ask.

Research support in their area and then send them no-pressure I-just-heard-about-this-and-thought-you-might-be-interested emails or notes about it. More support is always good, but a lot of the time, chronically ill people may not have the spoons needed to research it. National Associations or Patient Information Points at local hospitals may know of local support groups.

Don’t forget the carers. Many chronically ill people are looked after by spouses or parents, even children. Helping the carer means that they can look after the sick person better and the sick person will not feel so guilty that their loved one is their carer. Giving the carer respite breaks, calling them up and asking “how are you doing?” and letting them talk to you frankly or even finding them support (see if they have a local branch of the Princess Royal Trust for Carers , for example) as you might do for the chromically ill person will all help.

Be their advocate. If you are at an event and walking/seating is an issue because of their disability, ask if they’d like you to take care of it. If they say you can, be firm but not rude. Don’t embarrass them by making accusations of discrimination or by making a scene.

Don’t tell them about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).

Don’t pester them to try something you read or heard about and think might help. If you really think it might help, send them a newspaper cutting and leave it to them to decide whether to follow it up or not. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.

Never call them names related to their disability, like “hop-a-long” – at least not until they do it first and then be careful.

Never say “maybe you’re not that sick after all”, “it can’t hurt that much”, “you just have a low pain threshold” or minimise or trivialise the symptoms in any way. We get this enough from incompetent doctors when seeking a diagnosis. And far from making much of little aches and pains, most Spoonies are inclined to minimise their symptoms to the outside world – if we are showing pain, then it’s almost certainly a LOT of pain, not us making a fuss over nothing.

Temporary illnesses and injuries can help you to understand what a chronically ill person goes through, but it is never the same. We have symptoms that never ever go away and no one without a chronic illness can ever truly understand that. Be careful with simple throw-away phrases like “I know just what you mean” – you probably don’t! If you truly think you get tired or hurt like we do, then there must be something wrong with you!

If your friend has a disabled parking placard and you are driving, allow them to tell you where they want to park. If they’re feeling particularly good that day, they may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther – it’s a sign of independence and a striving for normality and should be encouraged as long as it’s not done to the point of overdoing things.

If you’re going out with a chronically ill friend and they mention they would like to or would normally use a mobility scooter, wheelchair, escalator, lift/elevator, etc don’t complain that it’ll take longer or draw stares. It may be the only way they can go out with you and not make themselves badly ill.

Accept that their chronic illness may be lifelong and may not go away. If they’re learning to accept it, don’t tell them the illness is winning and they’re giving in to it. They are simply being realistic!

See if there is any way you can enable them to do a loved hobby that their illness restricts. They may be an enthusiastic gardener who can’t dig or move a wheelbarrow or they may be a seamstress who can’t cut a straight line anymore. If by simple acts you can enable them to continue doing something they love, do it! It’ll be better than any gift.

Never assume they cannot do something without asking. It may be that it is something they can do on a good day and would like to, or that for them it is worth having to spend days resting before and afterwards.

Don’t not invite them to things because you don’t think they’ll be able to come. Having a chronic illness is isolating enough without feeling like you’ve been forgotten about completely.

Buy them a gift of a favourite magazine subscription. Having a chronic illness can be truly tedious at times, especially as you may not be able to get out to get things like magazines or may not be able to afford them.

If they don’t have a cordless phone, it would make a great gift! Comfortable phone headsets or phones with speaker capability make keeping in touch with friends even easier.

Ask what time of day is good for calls or visits. They may have a nap schedule they need to keep to or they may know that at certain times of day they’ll feel worse and won’t be up to polite conversation.

Be aware that what may seem like minor things to you can be big issues for a chronically ill friend. If you drive somewhere, ask if they’d like to be dropped off while you park. If you go for a picnic or to the beach, be aware that they may not be able to sit on the ground so bring a few folding chairs or cushions so they aren’t the only one perching above their friends. Walking from one shop to another may mean they need a rest before carrying on shopping. Trying to think about these things beforehand and to be accomodating will help alot…they are likely to not want to make a fuss and you helping in small ways can make a huge difference.

Give them a gift of an attractive plant like a rose bush that could be viewed from a window and say part of the gift is a planting service!

Never tease someone about how long they spend in the bathroom…don’t even mention it. If they’re taking a long time or going frequently, it’s because they need to!

If they have to stop work or receive disability benefits never say “well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it”. Most chronically ill people would dearly love to be able to work and be independent…and sitting on the sofa soon gets very frustrating if that’s really all you can do.

If your friend misses a special event in your life, don’t be grumpy about it. Call and ask if you can bring some photos over and tell them all about it. Let them know that they are still a special person to them and you want them to be part of your life even if they couldn’t be there on the day.

If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

Make sure they have an answering machine to screen calls when they feel ill…and don’t get offended or call back repeatedly if you get put through to the answering machine!

Check that your perfume/aftershave is okay with them. Many people with chronic illnesses end up with chemical sensitivities where some smells can make them physically ill. They may not want to offend you even if you are unconciously making them feel worse!

Never smoke around chronically ill people who don’t smoke. As well as chemical sensitivities, they may have breathing issues or the smoke might cause problems with a weak or suppressed immune system.

Never criticise someone for taking medications that may be addictive, even if they are ones with bad associations like methadone. Pain relief or illness treatment options can be very limited and it is far better for someone to have medication that makes their life bearable even if it is addictive, than to be in awful pain forever. Recognise that mental and physical addiction such as heroin addicts get is very different to someone needing a drug because without it they can’t get up.

Encourage them to research their illness and never tell them it’s making them worse. Self-advocacy in chronically ill patients has been proven to be beneficial to the patients and can be their best hope of getting a diagnosis, appropriate treatment and coming to terms with their illness.

If they need to cry, let them and just be there for them. Never say “don’t cry” or “this isn’t worth crying about”…it obviously is to them! And remember that while help is always welcome, do not make a chronically ill person into your personal project – at least not so they notice! Constant suggestions can be stressful in themselves! be subtle and be prepared to take a step back if needed. ]]> http://livingwithgp.com/2012/04/30/50-ways-to-help-a-chronically-ill-friend/feed/ 1 http://livingwithgp.com/2012/04/29/grand-mal-seizure-2/ http://livingwithgp.com/2012/04/29/grand-mal-seizure-2/#comments Sun, 29 Apr 2012 23:10:04 +0000 Kirby http://livingwithgp.com/?p=2172 Friday was an unfortunate day as it ended in me having to go to the ER, once again, for a grand-mal seizure. Tonic–clonic seizures (formerly known as grand mal seizures or gran mal seizures) are a type of generalized seizure that affects the entire brain (see Wikipedia for more information). At first it was thought, from my first one, to be medication induced, resulting from lack of Ativan in my system. But this seizure was much different in that I had just taken all my medication prior to my seizure, and while running low on Ativan, I was not out of Ativan. The only change in medication was when I went to the ER earlier that day (yes, I ended up back in the same ER following my seizure within 24 hours of my initial visit this week).

I find it difficult to understand how an RN can “forget” that Imitrex (Sumatriptan) is only found in INJECTION form, not IV form for one very important reason: it can stop the heart. I have survived 3-4 IV injected Imitrex situations out of pure luck but this one was not to be without problems. It could have very well lowered my seizure threshhold, which apparently isn’t very high to begin with due to my chronic problems as well as the vast amount of maintenance medications I am on, to the point where my other medications (oxycodone or whatever) were able to trigger the seizure when normally, they don’t.

This one was different, also, in the fact that I was alone in the room (kitchen) preparing my TPN bag after taking my nighttime medications, when it happened. I was standing instead of sitting in my chair, like I was the first time, which caused way more issues. From the pain and swelling, I figure during the seizure I hit my chin on the way down and ricocheted off the refrigerator a few times with my head and then finally landed on the floor. Of course the noise was loud enough to call my husband from clear across, on the other side of the house. Because we told him how well he did handling my last seizure, not 3 months ago, he considers himself an expert (I would never wish anyone an expert on handling seizures!) and did not feel it necessary to alert the paramedics with a call to 911, like he did last time. Too bad too; I wouldn’t mind saying hi to my neighborhood paramedics. They are great guys!

He simply held me up so as not to hit my head on the hard floor again, turned me on my side to allow fluid to come out of my mouth, and then waited for me to finish shaking. Afterwards we headed to my favorite ER and had a CT scan (I’m not allowed MRIs because of my neurostimulator and portacath).

I was not given a blood test; in fact, they didn’t give me anything by IV while there. I should have received a blood test. As if I could not make it easier on them, I have an accessed portacath from which blood flows freely when needed (I’m a hard stick now that my veins have shrunk; I make it a point to have them ALWAYS draw blood and give fluid through it). I only worry about my blood tests because I have started to develop petechiae under my eyes. I’ve also been running low blood counts for the past month. If it was just under one eye, I could attribute it to the fall from my seizure, but I have them under both eyes and it is starting to spread from out under my eye to my ears and other areas on my face. Hopefully it will start to heal and stop spreading as that might indicate a bigger underlying disease. I’m not entirely ready for that quite yet (as if you can ever be ready…).

So that is what I got to do this weekend. I wanted to make it a better weekend than laying around trying to recover the energy lost during the seizure, so we headed out to the tulip festival. I’ll wrap up this update with my favorite pictures from the day. I hope you are all enjoying your weekend and are having lots of happy tummy days~

These people were only a few of the ones that asked to take pictures with Ellie and I. I found the question odd, as I would never go up to anyone else and ask for a picture with their dog, but to each their own!

I have more to update but that will have to wait until tomorrow. I started a new medication called, Relistor, and I have started seeing new doctors due to some administrative complications. I hope everyone is having a good tummy night ~

The latest news on the preventable hospital error front is not good: a full-out effort by Massachusetts hospitals to reduce the number of serious medical mistakes they make each year failed to produce any reduction.

The number of Massachusetts patients who were given the wrong medication, had the wrong body part operated on, or were seriously hurt or died from a fall remained essentially unchanged in 2010 compared with the previous year, according to a story in the Boston Globe .

In all, 512 patients suffered from a so-called serious reportable event in 2010, compared with 510 in 2009, according to the story.

Alarmingly, the failure to produce results followed an intense campaign by the hospitals to reduce preventable errors in high occurring areas: falls, wrong medications, pressure sores and surgical mistakes. Hospitals across the country are paying more attention to these areas because of new federal rules that will prohibit hospitals from charging for treatment that was provided as a result of a serious event in the hospital, such as an infection from a bedsore or a hip replacement after a fall.

While hospitals work to reduce medical mistakes from their end, there are a number of practical steps consumers can take to avoid serious hospital errors. Following are seven of them: