Thursday, September 30, 2010

Special Day

So, today I had a special mass for Charlie. In the catholic religion, when someone passes away, it is recommended to have a mass for them. So that is what I did.
It was just a short mass and it wasn't the funeral or anything but I thought I would invite a few of my friends. To be honest, I wasn't expecting a lot of them to come, just because it's a week day and it was early in the morning.
I had a terrible sleep last night and when I woke up I wasn't looking forward to going to mass. I knew I would break down and I knew it was going to be hard.
But I was very wrong. It was hard, but I had so much support it was overwhelming!
We arrived about 15 minutes before the mass and every time I looked around the church, more and more of my friends walked through the door.
I honestly couldn't believe it! About 10 of my friends came to support me for that whole hour and I will never forget it!
Afterwards we went for breakfast and laughed and cried it was a great sad day.
I will continue to have masses for Charlie but I feel like next time I will be strong enough to go by myself.
In other news, I have rested my knee and I am back for my first day at work in a week! I'm actually really looking forward to it. I never thought I would say that!

Tuesday, September 28, 2010

Dentist Ordeal Part II

So, I went to the dentist today for a cleaning only to discover that I have a cavity.
The cavity is not really my fault. It's actually located in one of my wisdom teeth that isn't even out of my gums yet so it's impossible for me to reach with my toothbrush so it's not completely my fault.
Lately I've been flossing like a crazy person and I have a decked out tooth brush but alas I have another cavity.
Other than that new discovery, the appointment went OK. The only problem I have now is that the cleaning was at 12:30 p.m. and my teeth are still bleeding! (it is now 8 p.m.). So besides 7.5 hours of bleeding it has been a good day.
I'm still resting my knee for a few days as well. Hopefully I will be back to normal soon!

Monday, September 27, 2010

All's well that ends well

So, today I went to the Hemophilia clinic at 7 a.m. After an examination my hemophilia nurse was not convinced the pain in my knee was a bleed so I saw the Hematologist, physiotherapist and had an ultrasound.
My physiotherapist suggested that the pain could be caused by osteo arthritis. I understand that at first the symptoms pointed towards that and a lot of Hemophiliacs do have arthritis related problems but I was really upset that she would suggest that without knowing 100%. It was really scary to think that I would have yet another long term health condition!
Luckily, it turned out just to be inflammation in the joint from being over worked.
I say just inflammation like it is no big deal but it did cause me to spend all weekend in bed, 9 hours at the hospital and now I will be taking about 3 days off of work.
Don't get me wrong, it's nice to kick back and relax for a few days but there is only so much of it you can take. I guess I can look on the bright side and take this time to catch up on some housework and maybe work on my blog!

Saturday, September 25, 2010

Party Pooper

So, today I woke up and thought, hey I have a bleed in my knee. It's never a good day to have bleed but today just happens to be one of my best friends birthday party.

It started to get sore around noon but it took me until at least supper time to finally admit to myself that there was no way I was going to be able to go out all night with a swollen knee.

I called the birthday girl and of course she was not mad at all she was just concerned about me. I know it sounds immature but I was so mad that I couldn't go out. Even after all these years it's still hard for me to just drop everything I'm doing and lie around in bed.

Luckily most of friends are use to me having to cancel every now and then but I have to say it did break my heart to not go out with her. She has been there for me through good times and bad times and I hate it when I am unable to return the favour!

I guess I'll just have to get her an awesome birthday gift!

As for my knee I am still deciding what to do. The Hemophilia clinic is not open on the weekends and the emergency room is just a nightmare so I am going to give it one more day and if I am still in lots of pain by tomorrow then I will go in.

Part of me hopes that I will wake up tomorrow and the pain will be gone but I know the chances of that are very slim.

In the grand scheme of things spending one day in the hospital is really not a big deal but it still takes me a day or so to wrap my head around it.

In the mean time I will put my legs up, watch TV and try to relax!

Tuesday, September 21, 2010

Torture Test

So, Today I went for a HIDAscan its a special scan used to get look at your small intestines, liver and gallbladder. I got one today because my gastric intestinal specialist wanted me to get one so he could examine my gall bladder and hopefully help me with my gall stones.
I never had one of these scans before so I was very nervous this morning when I arrived at the hospital.
After a little wait I was put into a room with this giant machine and two technicians. They gave me an IV and injected me with a radioactive chemical. Then they placed this rickety old machine over me every 20 minutes.
After two hours of this I was then injected with a hormone that causes your gallbladder to contract.
This caused a lot of pain and cramping in my stomach but it went away after a few hours. After a few more pictures I was free to go.
I felt awful afterwords and I really hate the idea of having been injected with radioactive material.
Then again when it comes to something like that what are you suppose to do? If I don't try and do something about my gallstones I will end up having to get surgery which really scares me. So I'm trying to manage it any way I can.
I think a lot of these diagnostic imaging tests are designed for people who get maybe one or two in a lifetime.
It's not meant for people to be exposed to radiation over and over. But, when it comes deciding to get CT scan or not, I feel like I am in between a rock and a hard place. If I don't get it I could be bleeding internally which can cause permanent joint, muscle and nerve damage and not to mention a tremendous amount of pain.
If I do get the scan we can see if I am bleeding internally right away even though I know I am exposing myself harmful radiation.
I guess in this case you are damned if you do and damned if you don't!

Sunday, September 19, 2010

Hemophilia Camp

So, today I should of been just getting home from Hemophilia camp.
But I ended up not going, mainly because the other people I know ended up cancelling. Another reason was because I was afraid I would get upset about Charlie while I was away and at least when I am home I have Zane and I can easily call my momma.
The few weeks leading up to camp I would mention it in conversation and people would screw up their face and say, Hemophilia camp? What do you do there?
Well at camp, we do all the things you would do at any other camp, hike, swim, play games and do arts and crafts.
Most hemophiliacs live completely normal lives, they wall climb, the ride bike they do whatever normal healthy people do.
Every time someone asks me, what do you do at camp? I am confused. They act as if there is nothing a hemophiliac could possibly participate in at a camp.
Which makes me wonder since Hemophiliacs can participate in pretty much any activity what kind of knife juggling, running with scissors camp are all these other people attending!?

Friday, September 17, 2010

Decision Decisions

So, Canadian Blood Services was recently awarded 10,000$ in a negligence suit they filed against Kyle Freeman. Freeman donated blood and lied about his sexual status. When asked on the donation questionnaire if he had had sex with men he answered no. The decision to side with Canadian Blood Services was made, according to the judge, based on facts and not discriminatory.
I have to say I agree with the decision. It's easy to say everyone should be included when you are perfectly healthy and you don't rely on the blood system. But, if you are like me, you need the blood system to be the best it can be.
When someone tries to donate blood and they are turned away, they must feel awful and I can relate to that. With my illness I have felt like an outsider much of my life. But, I am the one who has to live with the results of the blood transfusion not the donor.
I understand that this might not be a popular opinion. I don't want anyone to feel bad about themselves or feel left out just because of their sexual orientation but if it is true, that men who have sex with men are more likely to transmit disease then I think they should be excluded.
With that being said, if people with brown hair, or people from Newfoundland or people who wear black shoes were a high risk group then I think those people should be excluded too.
I don't have the scientific information to say that men who have had sex with men since 1977 are a high risk group. But I can say as 100% fact that the families who have lost their loved ones from the tainted blood scandal are heart broken. I have listened to the stories of people who have had to watch their children, brothers and husbands die a slow, painful death and I think that we need to do whatever we can to ensure this doesn't happen again even if it means hurting someones feelings.

Wednesday, September 8, 2010

Ordeal at the Dentist

So, as if I don't have enough doctors already I have to add a dentist to the mix. Not just any dentist though, a special dentist who is use to dealing with people with bleeding disorders. Normally I don't' really care about which dentist I see but this dentist is all the way across town and it cost $ 17 in a cab each way. I don't take the bus to the dentist because it takes like 3 transfers and I don't take the bus if it has any transfers because I end up in the craziest places.
I hate the dentist, I hate the needles in my gums, the sound of the drill and I hate the spray of my own teeth splashing up on my face. Anyways, normally fillings aren't too much trouble for me but I do have a lot more bleeding than a normal person. Thankfully I have no more cavities and for the most part a healthy mouth! At least that is one part of me that's healthy!

Wednesday, September 1, 2010

You have to admit it's getting better

So, I went to grief counselling today and my counsellor feels that I should be going every second week instead of every week. She feels I am doing well. So that was good news to me.
Also, today was the day of my big speech! It went really well in my opinion. I was nervous I have to say. The auditorium was huge, much larger than the lecture theatres that were in my university. There were about 200 students there so I was pretty intimidated. I spoke for about 5 minutes, then we turned it over to the students. For about 50 minutes they asked me about everything from having children to shaving my legs. I was really glad that they were interested and kept coming up with new questions. It went really well, I was glad I did it and I hope the students learned some new things about Hemophilia.