Enjoy Today!

Hello Everyone

I wanted to start off by letting everyone know that this will be my last entry for awhile, and quite possibly forever. My health has gotten to the point that I have not been able to keep writing. The real truth is my health is so poor now, my life is consumed with medical… well Everything!

I gained another specialist who wanted a detailed medical background. She is fantastic but brought reality to me when she stated I had 18 separate medical illnesses and diseases. I know one thing is for sure once my stomach died (Gastroparesis), I realized even the joy of food was taken away from me. I lost so much weight the doctors made me put in a feeding tube…But what’s another surgery right? So now I have more tubes and wires coming out of my body than I can handle.

All I can say is…

I wish that I could still go swimming. I wish I had the energy to go dancing. I wish I could get the chance to smell tropical rain. I wish I could watch a sunset over a beautiful body of water.

But what I really mean is I want to be normal…

I wish I was exhausted from a baby keeping me up all night. I wish I had a mother in law who drove me crazy. I wish I had teenage kids to get frustrated with.

The real truth…
I wish I could have one day, just one day to feel normal.

These are things you might still be able to enjoy today. Take the time, while you can. Why not… enjoy life?

Pamela

Adult Bullies

I bet you never thought nowadays you would hear of adult bullies. I sure didn’t think I would ever come across adult bullies in my lifetime. I was done with bullies, school was over! I’m the type that if I ever did come across bullies (no matter what age), I always knew that I would be able to stick up to them. I am 32…now, at my age, it should be the easiest task ever.

Well, that’s just not true in my case. Because of all my brain surgeries, they removed the part of my brain that deals with the Fight or Flight response (my pituitary gland). So now, I don’t have that important gland anymore.

As an example: If I’m ever dealt with something major, or there’s a major crisis, I usually will sit there and absorb the situation. I won’t run and I won’t fight. I literally sit there and I don’t fightback, nor do I run. Like I said, I am frozen in time for a bit.

So there I was, minding my own business like any other day, waiting to get my treatment at the hospital.

A Walker Death

As you all know I have been feeling terrible and my pain has gotten worse, but the one major problem I noticed is my legs are so numb I have been falling. My falling has gotten to the point that my mom had to go out and buy me a walker. At least it is fancy blue. It is so embarrassing at my age to be using a walker, and you can just imagine the looks I get when I went outside. Here I am, I look like a capable 32 year old, and I am on a walker. It is a lot different from the first time I ever had to use a walker, now at least I am not trying to escape from a hospital (another story, another time)! Anyways….

The major kick in the butt though was learning that I have pancreatitis. Just another day, just another organ failing.

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.

I Am Struggling, But Still Going.

I hope that everyone’s summer is going well. I am out of the hospital but it has been difficult. I have found myself unable to keep any food down and have been surviving on peppermint tea and vitamin water. As you can imagine my body is struggling and starving. I am hungry but can’t keep anything down. It is so embarrassing because when I go out into public I have to keep a bowl or bag to be sick in.

My nausea is so bad and the doctors have given me the strongest anti-nausea meds, and they just are not working. I wonder just how long my body can actually handle not having any nutrition. I have tried eating just little pieces of cereal or crackers only for them to come back up within minutes later. There are times when I think to myself, and not lightly either, that I would actually trade in my nausea for more pain if I could.

More to Come, Because I am Still Alive…

I just want you all to know I am out of the hospital and back home trying to recover from just over nine weeks of fighting to regain some sort of health. It might take me a few days, or a week, to get back to blogging since I have to still wrap my head around all that has happened. I also have to absorb the miracles I witnessed and try to put them down on paper.

I want to thank you all for staying with me even though I had not written anything for weeks while in hospital fighting for my life. I was blessed with great doctors, nurses, care aids, and roommates all who helped me recover, even when I was fighting against their wishes when I was confused and septic.

One thing I hope is that my brain can still work the same now after all that has happened and with all these new meds. Truthfully I don’t feel the same and I am finding that I am struggling to write. Hopefully this is temporary and happens to writers, like after they take a vacation.

Speaking about vacations…… We are obviously not on the cruise to Alaska. I did not get to go on my bucket list cruise and take my mom on a Mother’s Day cruise because I was sick. Guess what happened when I went to get my money back? Norwegian Cruise refused to give me my money back. They took my money and said, even though I gave them a doctors document signed, “No”. I am so angry I can’t even talk about it right now. I feel like they have stolen from me. I am on disability I have saved up for a very long, long, long time. Now that money is gone along with my dreams and my mothers present. And my Mother is so deserving of a gift and a vacation. All she does is watch her daughter die, it would have been nice for her to see her daughter smile.

Pamela

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.

A Week From Now…

As you have already noticed by my lack of posts I have not been well. I went for a procedure and the outcome was not as expected. My brain is now registering things it is not supposed to. Such as my nerves are noticing my glasses on my face, the wind on my skin, the weight of my clothes, how heavy my hair is. This would be a cool party trick if it was not so painful. It is unbelievable, the pain is intense and constant. All my nerves that are supposed to be asleep are now awake.

Now the doctors have been trying to fix the problem which ever way possible. I know I complain a lot about my pain but now my pain has been ramped up so bad that the doctors only had two choices; put me on loads of extra pain medication or to sedate me. They chose both options.