Monday, April 7, 2014

Janeway

So, I've talked about this many times but back in 1996 I spent about two years on and off in the Janeway Children's Hospital in St. John's Newfoundland.
I often talk about how I received 150 units of fresh frozen plasma, how I almost bled to death and how I missed an entire year of school but I never talked about the other children that I met while I was there. When you are in the hospital for such a long time you really begin to bond with the other children around you. The wonderful thing about sick children is that they are amazingly resilient. They don't act sick, they don't feel sorry for themselves and they don't complain.
For some reason I can't help thinking about two friends I met while I was there.
Jake was in the janeway forever, he was younger than me but seemed to be an old pro at the whole thing. All the nurses knew him very well and I remember he was always in a lot of pain but he was very sweet and kind. It seems to me like he was released and then must of relapsed and came back in. I remember him being wheeled back into unit 2B. I dreaded seeing him again because I knew it meant he was very sick. The whole thing was so traumatizing I still remember my patient number 201266. We all wore our hospital bracelets for so long they eventually cracked and fell off and they had to be replaced.
When I was finally released I found it hard to take off my bracelet it was so much a part of me I felt like it was something I survived and I didn't want to forget. For the record I did take it off but still have it saved in a photo album somewhere.
My other good Janeway friend was Amy, she had two old sisters and I remember them buying rabbit ears for the TVs in the hospital so they could watch soap operas.
Amy and I shared a room and even as a little girl I remember thinking that she was much sicker than me. I also remember how beautiful she was and her and her family seemed to have so much fun together even though she was in the hospital.
 A few months after I was released from the Janeway my mom found Amy's obituary in the newspaper. I was very upset but I don't think I really knew how to process it. Lately I just feel somewhat guilty that I was the one who survived. I also feel happy that they are no longer in pain because I can tell you first hard it was torture. If their families or anyone that knew them ever read this please know that they are remembered even by people that only knew them for a short time and please know that they they still inspire me to push through even when I feel like giving up.



Friday, March 28, 2014

whole health

So, I've been thinking that I need to start getting myself stronger and healthier. I am not 100% sure how to go about this but I have decided to start by losing weight. At the moment I could certainly stand to lose 50-60 pounds and I am determined to work on it in the healthiest way possible. 
I've joined the gym and have been working out every second day. I am also following a low carb diet and trying to cut out sugar as much as possible. 
Another part of my plan is to meet with a natural health practitioner to help me with vitamins and supplements and things like that. 
I know I have a hard road a head of me but I know that it will be so much better for me overall. 
Another goal for me is to have the weight gone by Hawaii. We are planning on heading there in October for 9 days. I have never been anywhere like Hawaii so I am really looking forward to it. 
I promise I will try my best to be as healthy as possible but it will certainly be hard. 

Sunday, March 16, 2014

Happy Birthday to me!

So, I just celebrated my 31st Birthday. I can't believe I am 31 years old I have to say the time has passed quickly. I celebrated by having a birthday party at an Irish pub down the road. I had 34 wonderful friends show up it was pretty amazing. I had two birthday cakes and lots of presents and cards. I was very overwhelmed and happy I must say. Each year that I get to celebrate with my friends is a good year because I've spent many special occasions over the years in the hospital. I am slowly recovering from my three in a row sicknesses and I am hoping this is the end of it for at least a few months.

Friday, February 21, 2014

The Neurologist

So, I went to see a neurologist today and I've decided that I would like to go see one every day because he was so kind. In all seriousness he said that my recent bouts of pains were not neurologically related. He said that sometimes tests come back negative but at the end of the day if you're having pain your having pain. He seemed to really understand both sides of the story in that my Doctors don't want to give me plasma willy nilly but at the same time, I don't want to be in pain. He suggested that I sit with my doctors and come up with a plan for the next time I have unexpected pain for example, how many days will we let the pain continue before we infuse?
The neurologist then went on to say one of the nicest things anyone has ever said to me. He said that I seem like a very strong and very resilient person, he said that I didn't describe myself as a victim and that he was very impressed with me. 
When you are a full time patient you don't get a lot of things like that, I don't get promotions or huge pats on the back like that. 
I guess having someone say that to me is the equivalent of a normal person getting a good performance review which again doesn't happen to me a lot because most employers don't appreciate their employees being off sick often. 
I am really happy I went to the appointment and I am very happy that I don't have any underlying issues because I must say having Hemophilia is enough!


Wednesday, February 19, 2014

Recovery Time

So, I was on short term disability but my doctor has cleared me to go back to work so tomorrow I will return to normal life. Today it preparation I ran some errands, cooked supper and tidied up around the house. I have to say I am completely exhausted. My arms feel tired as I type this. 
Over the years I have noticed that the older I get the longer it takes for me to recover both mentally and physically. At the moment the pain is a lot better I am no longer on pain meds and I am almost 100% but mentally I feel so tired. All I want to do is lie down and watch TV. I guess all the stress and a pain meds and interrupted sleep adds up after a while.
I met with the clinic staff to discuss some of the problems I have been having and they have decided to send me to a neurologist/ pain specialist on Friday. 
I agree that it is very strange that I have such severe pain yet the scans reveal no bleed. 
But the fact that it improves almost immediately with plasma makes me think that it must of been some sort of bleed. 
Either way I will try my best to get back to normal and hopefully I can go at least a few months without having another bleed. 

I've attached a picture of Zane and I in the hospital in December 2013, January 2014 and February 2014, its been a rough few months! I don't know how I could do it without Zane. 


Saturday, February 15, 2014

Nobody knows you when you're down and out

So, this statement in my case is completely untrue I have lots and lots of wonderful friends and family in my life. But, sometimes when you are sick it feels like this. It feels like you are the only person in the world suffering and everyone else is just going on with their lives. That is very true to some extent when you are sick the world goes on without you and as much as you want everything to stop it doesn't and people still expect things of you like, when are you going back to work, what did you do all day. I smile and say next week but i really want to say are you kidding me? I don't even want to get up in the morning let alone go back to work. Maybe each person only has so much strength and courage at one time and I have to say at this moment my strength and courage is gone. It got all used up when I had to keep together when I stayed up for 48 hours straight in pain and when I had explain a million times to the emt, the nurses and the emergency doctor that I just need my plasma. Being in pain and having people not agree with you or refuse to help you is the worse thing I can imagine. The other worse thing is having to see the stress in your familys face when they come to visit you in the hospital or as they watch you being loaded up into an ambulance. 
The biggest secret about being sick is that you have to be positive and I hate it when people say that to me I want to smack them but its very true. Noone wants to hang around with someone who is constantly complaining no matter how justified that complaining may be. To you, the sickness is the most important thing in your life but to someone else its just another day. 

Wednesday, February 12, 2014

Standards of Care

So, Monday I went into the Hemophilia Clinic limping and in lots of pain. The Ultrasound came back clear so they sent me home. By Tuesday morning I was in so much pain that my father had to call an ambulance. I called the Hemophilia Clinic and they told me they did not have time to see me and I should go to Emergency. I've contacted lots of other patients and they said that they have never heard of that in all of their lives. So its come to my attention that my clinic is not treating me appropriately. Honestly out of all the terrible things that have been happening in the past few months this has been the hardest to deal with. I love my clinic so much and over the past few years its been so comforting to know that I have these people in my lives. But over the past few months they have been sending me home when I am in pain and its been causing me so much agony and stress. Honestly it is so traumatizing to be in that much pain. It was so bad I tried tylenol, percocet, codeine and hydromorph. Nothing took away the pain enough so that I could sleep so I just sat and watched tv for hours and hours looking at the clock waiting for the clinic to open. When I called them and they said go to emergency I felt so hopeless, it took everything in me to just make it 8 am.

We spent 9 hours in the emergency room. I had moprhine, maxiran and benedryl and I only started to feel a bit of relief after about my second unit of plasma. 

Today I am still in pain. My leg is still a bit sore, I am tired from not sleeping and my stomach is sore from all of the drugs I feel bad for all the stress I caused my Dad and Zane and I am hurt that my clinic isn't helping me.