The New Tattoo

Well it has been a very long time since I have written I was having difficulty transferring posts from my iPad to the blog. So sorry. I wrote this Dec 12 2013. I have been in and out of hospitals fighting infections, having treatments for months on end, and I am completely exhausted. If I am to be honest I am feeling really worn down. At times I have wondered if I have a bit of depression with everything that’s going on, but then my friend lets me realize how can I not be mentally worn down with everything that’s going on. All the exhaustion and pain can get to you a lot of times.

I have been trying so hard to be upbeat for this blog but recently I haven’t been feeling upbeat so I haven’t been writing, but I decided to get off my butt and at least try. Then out of the blue my mom decided to give me my Christmas present early. She bought me an iPad, and I figured why not type up a blog while in bed. So here we go….

I’m going to tell you all about my new tattoo. This tattoo is from when I was in a Vancouver Hospital for 10 weeks . This was the hospital stay when I went for a treatment that went very very very wrong. This treatment gave me a taste of severe delirium.

At some point early on in my treatment a nurse or someone, possibly even a doctor, had accessed my Picc line and did not use proper sterile procedures. Due to this I ended up with bacteria and fungus that went into my bloodstream. This bacteria travelled into my heart and all over my body, it even almost crossed the blood brain barrier. The one fungus was Candidida and I cannot remember what the gram-negative bacteria was because there were multiple.

My treatment continued because my doctors did not realize I had contracted these bacteria and fungus through my Picc line. The delirium was able to grab hold real tight because of this loss in treatment time. When they found out I had this new illness along with my many others to treat they had to cancel my treatment, but it was way too late I had already started to regress to behaving like a three-year-old.

I did not know who people were, I did not know their faces, people would scare me, I was terrified all the time, and I even had to learn how to walk again. What I remember the most was how terrified I was.

The one thing I knew was that my doctor had written on my medical board this too shall pass by God’s grace. I stared at that saying on my medical for weeks. It was the only thing that didn’t upset me. Anything that was placed on my board like pictures with letters and well wishes to get better, and crafts made from my friend’s little kids, I couldn’t remember who they were. I didn’t know who anyone was. I knew my mom that was about it.

When the delirium was starting to take hold I was about the mental capacity of age twenty. I was still able to go to the fourth floor and go outside where they have a garden on the roof. I would sit under their cherry blossom tree because the cherry blossom tree is my favourite tree, I felt safe under it and I would sit there for a long time. Within the next two days my mental capacity went down to about age fifteen. That’s when I started breaking off the branches with the leaves and the cherry blossom flowers and bring them up to my room. I would put them in a vase so that I could stare at them all day.

Soon I was getting tired and I was having trouble walking out to the garden. That’s when I would say my mental ability went down to about a five year old and then that’s when things get a little bit more hectic and difficult. By this time I was walking with a walker and I was still able to go out to the garden and relax but things were getting a lot more confusing to me. I was having difficulty with people scaring me, I couldn’t walk by people in the hallway because it reminded me of people that hurt me in the past.

It was so difficult that within a couple days my mental capacity went down to about a 3-year-old and that’s when all hell broke loose. I even tried to escape the hospital, succeeded, and had security running across the street after me in downtown Vancouver. Quite a funny site since I was still using a walker. So I ended up having 24 hr care aides by my side for my safety.

Because of this I was no longer allowed to go to the garden, which meant I was no longer able to sit by the cherry blossom tree, which meant I had nothing to look at to keep to keep me calm. Luckily I had a loving roommate named Diane who had a plan. She phoned up someone special that she knew.

Her son is married to the daughter of someone very famous here in Canada who teaches about nature and the environment (I have not been able to ask him for permission if I could put his name in my blog). Anyways he said to Diane go out and buy an orchid that looks exactly like the cherry blossom flower and then your roommate can stare at it to keep her calm. So that is exactly what she did, he told her the name of this special orchid and it kept me calm for the rest of my stay at the hospital.

So I took a picture of my orchid from the hospital, along with the saying that my doctor put up on my board, and that was the inspiration behind my tattoo as you can see below. I hope you like it.

The Infection That Won’t Go Away

I wanted to write a quick update to let all you readers know that I am still alive and am recovering from many hospital admissions these past few months. It has been a struggle for me physically, mentally and emotionally. I have even lost about 40-50 pounds while fighting, but I am trying to hang in there.

Along with all of my health issues and multiple illnesses, I am currently fighting a major bacterial infection that I acquired from contaminated IV fluids called, Sphingomonas paucimobilis. I was receiving these fluids as part of my treatment, but because of my lack of immune system my body was not able to fight this particular bacteria.

This bacteria should have been easily taken care of with antibiotics but unfortunately for me this was not the case. I feel like my body is actually breaking down. It’s like my organs have finally decided they no longer want to work and they are tired of fighting. Because I have no immune system to fight off the bacteria I have been on antibiotics for the past eight weeks and am scheduled for another four weeks. I currently am hooked up three times a day to my PICC line for the IV antibiotics and I can’t wait to be done with them. My veins are no longer usable in my arms to take blood from so they have been taking samples from the veins in my feet. I can’t begin to describe how painful this is, and they also run IV sites when needed in this location as well. The worst thing about it is all the sites get infected because of this bacteria in my blood.

As you can imagine I am exhausted and weak, and have been instructed to sleep as much as possible. Hopefully with this rest my body can fight off the infection and I will be back to writing as soon as possible. In the mean time I am hoping to have a couple of guest writers  who will talk about their life experiences. These entries will be about their journey with a brain tumor, or experiences with the hospital and being sick. Some might just be about living life in general while others hopefully will just be funny tales to make us all laugh.

I hope that you all stick around even though the blog entries are not as frequent while I am trying to recover. One thing I will try to promise to work on is some of my bucket list stories that will be sure to make you laugh and cry. I am trying to make the blog more uplifting like it was at the beginning before I was so ill. One entry I promise to write about is my new tattoo and the meaning behind it. My tattoo was inspired by the ten week stay in hospital recently and is a great story.

Thanks for sticking around.

Pamela

Scared, Confused, and Still Waiting

I am out of the hospital and am trying to take it one day at a time. Eating is an issue as my body is rejecting solid food and even some of the liquids we are trying to prepare. It is a good thing that I had extra weight on me due to the steroid treatments I am on, so that I had some pounds to lose. Everyday has been a struggle and I have noticed it hard just to get up in the morning, I am so exhausted and sore.

I am finding it so hard to talk about, or even write about, my experiences from the last ten weeks in hospital from when my experimental procedure failed. I do not even know where to begin to discuss the trauma and horror show, it was continuous. My head is still bombarded with flashbacks and memories, and all that occurred from the experimental treatment. Not to forget the gong show that happened because of it. The memories are permanent, and I will admit, I am afraid that I might lose my mind because of all the new medications they have me on now.

During the treatment I ended up being trapped in my own brain. I was literally TRAPPED! There were two Pamela’s. I knew everything that was going on around me but could do nothing about it.  I was unable to communicate what was happening to others and I was unable to tell them that I (the original Pamela) actually still existed and was still alive. Because there sprung out another Pamela who began to regress as time passed. I regressed all the way to about a three-year old. I was walking with a walker and no one could understand what I was saying because it was gibberish that made no sense. I was trying to communicate that another Pamela was trapped in my brain but it was hopeless. It was hell.

The Wolf Ate My Sheep!

It has been a long time since I have checked in and was able to write for my blog. As some of you already know I was extremely excited because I was looking forward to coming to Vancouver for a four-day medically induced coma. Where I would be completely out of pain for four days while the doctors try to figure out a way to get me out of my extreme pain. Especially since my new diagnosis of Allodynia they have tried everything.

When I arrived at the hospital it was March 11th and I arrived bright-eyed and ready for anything. I had hopes of sheep bouncing in my dreams, and yes, my sheep had numbers on them like the Seely commercials!! Anyways, my hopes and dreams of having four days of pain-free sleep were shattered when mom and I realised there was a big mix up in communication between my doctors and specialists.

Gotta Love the PICC!

Well I have been struggling with keeping people up to date with my life in my blog and I am sorry about that. Things have been busy for me lately with lots of tests and procedures. The sad truth though is that my daily life is always the same thing over and over again. Pain, nausea, treatments, tests, and then more pain. Nothing much new other than that.

One thing that is new in my life, I now have a PICC line. I decided to get this while I am waiting for a surgeon to put in my central line. The nurses and I are so happy that I finally put my foot down and requested to have this put in. I was so sick and tired of having to get new IVs daily. It was sometimes painful and it was a pain in the butt for my nurses who had to struggle to find a good vein that they could access for my treatment.

A Little IV Therapy Here, A Little IV Therapy There

As I fight off sleep (as usual) I am trying to put together a quick little post to let you all know that mom and I were able to get away for a few days during christmas. Some of you might remember that my Nana, who lived in Manitoba, passed away this summer. So mom and I decided that we were going to spend this christmas with our family in Manitoba.

Trying to get away for us with my health sometimes is a nightmare, even if it is being planned. If we waited for my health to improve, we would be waiting forever. No time is a perfect time, and no matter how prepared we are, something always happens. We have learned to just breathe and try to relax. In the end no one is going to die if we just take our time, but if we rush, someone could.

This trip has of course come with its own surprises already. I already have been to visit the inside of an ER for the last two days. Now I will have the privilege to visit the Day Treatment area for IV therapy and hydration for the next five days. I must say that the nurses here in Manitoba are super nice but I miss my nurses back home. (Hi GDC Nurses!)

Due to the nausea and vomiting, I am dehydrated, which can cause your veins to hide. I also have been receiving potassium infusions for a while now which is brutal on your veins and can also make them hard. So as you can imagine I am a very hard IV start. After many failed IV attempts and multiple blown IV’s I eventually did get my treatment, but the nurses here are ready to send me back home to my other nurses!

One thing I know for sure is that they have nicer chairs!

Pamela

Waking Up From My “Zombie Meds” Induced Fog

I am finally home from the hospital after almost a month of tests and procedures. A lot of things have changed and my medications have changed a ton as well. One thing we found out for sure Neurologists confirmed I have small fibre peripheral neuropathy. So at least we know my crazy nerve pain is real. The one problem I am still dealing with is the side effects of the “zombie meds”, due to being in the hospital.

I was put on medications that I like to refer to as my “zombie meds” since they knock me out cold! They are anti seizure medications and I am still feeling the effects from them even now.  I seriously do not remember almost a complete two weeks of my life, just blank… missing. I am glad to only be on one of them now.

Even currently as I am trying to type out these words on the keyboard, I am struggling to make my fingers work properly. My manual dexterity is not responding well at all. My coordination is shot and I constantly am having to erase what I have written and then have to re-write it because I am hitting the wrong keys. I fall asleep in mid sentence while I am typing and then I can not remember what I was writing about. I try to keep my mind on track and have an actual thought process but it is impossible. I have been trying to write this post now for almost an hour… and look I have nothing written.

Nerve Pain: Is It Real Or Not?

Another quick update for those of you waiting to hear from me, sorry for the delay….

I am on the homestretch for my stay here at the hospital and I have one week left (hopefully)!!! The food has been absolutely atrocious, especially since I am gluten-free and there are no options. The highlight of my culinary choices include a popsicle and gluten-free gravy. Seriously, I am not kidding! That is what my roommate and I have been laughing at, hysterically. What am I supposed to do with the gravy? I sure hope they do not expect me to dip my popsicle in it.

There are a lot of things I will be thankful for once I go home. One of them would definitely be not being woken up at 6am for blood work every morning. Another thing I look forward to is using my own bathroom, with two-ply toilet paper. I could also use the shower in peace knowing that no one will walk in. I also would not have to worry about touching anything and getting sick from it. I don’t have to wear flip-flops on my feet and I don’t have to worry about touching the walls of the shower or the shower curtain and wonder if they have ever been clean because you can visually see the mould.

Today has been an interesting one because we tend to have a few more questions in regards to my nerve pain than we do answers with the actual diagnosis. My Neurologists are diagnosing me with small fibre neuropathy but my pain doctor is diagnosing me with severe Fibromyalgia. The issue I guess is that some doctors claim that Fibromyalgia is not a good diagnosis to have because it does not truly exist. So… if there are doctors in the world, who do not believe in Fibromyalgia as an illness, where do I fit with my diagnosis when my nerve studies prove positive for neuropathy?

I am not too sure how I will be treated now that I have an illness being placed on my chart that not everyone stands fully behind. Honestly I am not too sure how I feel about the actual diagnosis without having more information about it. I will have to look up Fibromyalgia and gather up some information about this new illness before I “Jump the Gun” and dismiss its validity. For all I know both nerve diseases can exist at the same time.

I will write more later but I just wanted to put up a quick post to let you all know I am doing ok.

Pamela

A Window: Seeing Joy In The Simple Things

Here I am staring at a wall, a curtain and thank God a window! Yes, I have a window for three weeks that looks onto a community garden. Having a window while in hospital is one of those lucky moments in life. It ranks up there with licking a wooden spoon with freshly beaten batter on it, or laying under a freshly cut christmas tree all lit up. When you are cooped up with hardly any fresh air, it is so nice to at least be able to look outside. I might have to share a room, and a shower (and a bathroom)… but I have a window!

I am doing pretty good. My first week is over, and I have a little bit of free time to write a quick update for you. I am busy as heck that is for sure! I am going non-stop with appointments, tests, and procedures. Whatever they can come up with I have done with a smile. Mainly this first week has been more laid back, as they are gathering background info and medical history. Most of my time has been filled up with interviews.

IV Antibiotics: Currently My Best Friend

I just wanted to let you all know I am back on my feet and continuing my daily treatments at the hospital. I am all hooked up to my IV Antibiotics for the next ten days in hopes to clear up the infection I have not been able to rid myself of. Sometimes I forget that my immune system is non-existent! It has been a harsh few months and my nausea has been kicked into overdrive.

One thing I know for sure is that I am exhausted. I sleep most of the day and then go to the hospital for my treatments and sleep while I am there for at least 4hrs everyday. Then I come home and sleep until my mother comes home from work. That is not until 7 or 8 pm (if I am lucky to see her that early because she works so hard). After we relax and watch a couple of hours of TV it is back to bed for the night before I know it. I wonder if it is normal that I am sleeping as much as I am? Possibly I am a little down in the dumps and don’t even realize it. Good thing my dogs still love me regardless of how I feel.

I have a little bit of time to get ready before I am hospitalized in Vancouver for three weeks, so I have started to do some research. I have been phoning hotels and asking if they have a discounted hospital stay rate because three weeks in a hotel is going to be pricy for my mom. This also will be the longest stay I have had in hospital since my Celiac diagnosis. I am a little nervous that I will not be able to eat any of the hospital food due to my new allergy. This will just place added stress on my mother to try to find me gluten-free options from restaurants around the area. Who wants to deal with that nonsense? I must also be realistic in the fact I don’t even keep my food down enough to justify her running around town trying to find me something to eat.

I have also been thinking about what to take to the hospital to keep me occupied while I am not undergoing a test or procedure. I have a feeling a lot of the tests will be painful, so I have to find something to keep my mind off of being in hospital. Scratch tickets can keep me occupied only to the point of going broke at some point. So if anyone has any suggestions out there for good magazines, books, or games that you know of let me know!

Pamela