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

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 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.

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.

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.

Waiting and Praying Patiently

The verdict is in and it is what I was hoping for! I am finally going to be able to get a permanent line placed in my chest for daily access. I can not tell you how happy this makes me and a lot of nurses in General Daycare who will not have to poke me daily to get IV’s started.

I am either going to be getting an IVAD or a Tunnelled Line known as the Tunnelled Groshong. I would prefer the Tunnelled Line over the IVAD because, my mom who is a nurse, can access it in an emergency a lot easier if needed. Also, when I am having a real hard time eating and keeping food down, I can be feed through my Line but I can not do that with an IVAD.

An IVAD is esthetically pleasing since it is just neatly tucked under your skin and is completely hidden. That is not the case with the Line at all. With the Tunnelled Line your skin grows over the tubing, but that tubing and access point is always going to be sticking out of my chest. I will never be able to swim again and that does upset me. But there always has to be sacrifices made when you are getting a convenience in medicine, such as a permanent access line.

I can not wait to get my daily treatments through my new line. There is only one thing holding us up… I am waiting for a surgeon to take on my case. Since I have a probability of not waking up and am such a high risk case, there are not very many surgeons that will want to take me on as a patient. That is ok because I have only been waiting a week, and I am sure some doctor will take the chance.

Pamela

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