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.

A New Year… IVAD Prayers All Around!!!

A whole year has gone by and I am still here! What the heck, eh?

Please don’t misunderstand me, I am not complaining about the fact I am still here with you. But, I will be honest about not feeling confident or strong enough for another year of my increasing pain. I know I will not get any better and that is my reality. I truly am at peace with that. I just struggle with the pain… I do not understand sometimes what lesson is to be learned from having this pain.

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

I Am Letting Time Pass Me By

I guess I just have to admit it. I can no longer ignore what is staring me in the face day after day… I am sleeping what is left of my life away. Sleeping. Precious time that I could be doing something valuable or accomplishing something that has some sort of value to someone. But no, I don’t. Instead I have nothing to show for myself, nothing to my name. Instead I sleep my time away.

My days seem to be getting shorter and shorter because of it. I am awake far less now a days, and when I am awake, I am so exhausted nothing gets done. It seems that the days fly by, and if I were to sit down and figure it out, I bet I am awake less than ten hours a day. I easily can sleep away 12-14 hours a day if I were to add up naps, and include the times I fall asleep at the hospital and doctors office.

I have started to notice how quickly the day is over for me now.

WARNING: DEPRESSIVE POST FOLLOWS

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.