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!

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. 

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. 

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. 

Worry wort

So, I don't know if other Hemophiliacs worry about these types of things but lately I've been starting to worry about the effects this wonderful disease has had on me over the years.
For example recently I've begun to wonder if I will have liver damage because of all the medication of taken over the years. In January alone I took more than 25 percocet pills. I don't take pain killers on a regular basis but over the course of 30 years I'm sure they all add up. I'm am starting to wonder if I would benefit from trying things like medical marijuana would help with pain management and not affect my liver. I know a lot of Hemophiliacs who use medical marijuana because over the years they have contracted Hepatitis C so they use it to avoid further liver damage.
Another thing I worry about is radiation. So far I have had many, CT scans and X rays to the point where if I ever do go into emergency the doctor always says I shouldn't get any more scans and looks at me like I am crazy. This is scary to me considering the doctor is only looking at my chart from the past 7 years.
Employment is something that is stressful also. To date, the longest job I've ever had was two years. I haven't had much success with creating a career for myself and I feel it is because of my Hemophilia. I have had employers hassle me about my illness to the point where I just quit myself. Its very frustrating I must say. I often feel stuck in a rut with not many options to get out.
And don't even get me started on how stressful it is on me to travel. I am just getting over my trip to Newfoundland that I took in November.
At least with all this worrying on my plate I will never be bored!

The joys of having a Hemophiliac friend

So, I've been meeting a lot of new friends lately and since I thought I would write a little bit about the fun things you can expect when you are friends with me

1. I may cancel plans we have at the last minute. I don't do it to be hateful I just get aches and pains and sometimes have to cancel out of no where. Sometimes I honestly have something wrong with me medically sometimes I just freak myself out and think I have something wrong so I cancel.

2. Don't loan me anything unless you don't care about it getting destroyed or never seeing it again.  That has nothing to do with my Hemophilia I am just terrible with borrowing things. 

3. You can't be afraid of blood. I talk about blood and organs and bleeds and all sorts of gross stuff all the time so if you have a weak stomach I may not be the friend for you. 

4. You will become my nurse/doctor. I often as my friends for medical advice even if they have no background in Hemophilia or any medical background whatsoever. I appreciate their advice and like getting different opinions on things.

5. I will message you late at night. Often when I am having a bleed or in pain I like to talk to my friends to get if off my chest. I don't expect a response its just nice sometimes to text to take my mind of the pain. 

6. I love birthdays. I will always do something for you on your birthday. Over the years Ive been known to make crazy cakes, throw surprise parties and completely take over all the birthday planning even if we've only been friends for a short time.