Happy Halloween

So, I love Halloween! Over the years I have spent every holiday in the hospital, my birthday, Christmas, New Years Eve, Saint Valentine's Day and Halloween! but never the less I love them! This year I dressed up as a cat! I am really not great at thinking of Halloween costumes so I think this has been about oh I dunno, the 7th time I dressed up as a Cat. Speaking of Halloween and scary things, I have been scared to take the latest medication I have been prescribed. A while ago I blogged about my ordeal with my gallbladder. Well the medication the specialist gave me is called Ursodiol. It's used to break up gallstones without surgery! I was so excited about it but since I've been reading the side effects I haven't have the courage to even take them. Some of the side effects include: nausea, head ache, dizziness, runny nose, sore throat, joint pain and hair loss. Believe it or not I wasn't too scared until I read HAIR LOSS. I know that makes me sound like the most vain person in the world but there are some side effects that really bother me. I am currently working with a natural medicine specialist and she says that she can get rid of my gallstones by taking natural supplements so at the moment i am thinking that is my best bet. On the other hand I do need to get rid of these gallstones as soon as possible. by having them I could have an attack at anytime and although it is very rare an attack can be fatal. Also by keeping them I am horrified at the thought of having to get them surgically removed. Either way, all of my options involve some risk but I guess that is just part of Hemophilia life!

Bad Blood

So, a few weeks ago I watched the Bad Blood Documentary http://badblooddocumentary.com .
It was the most terrifying thing I have ever saw. The directory Marilyn Ness did a wonderful job of getting you emotionally connected to various families who start off the film smiling in family photos. You are then told about the pain they have had to endure throughout the course of their lives, massive bleeds, huge swollen joints. Things start looking up when the documentary describes how factor replacement therapy came into place and now hemophiliacs have access to treatment when ever, where ever. It was thought for some time that it was a miracle cure. However, the medicine that was suppose to make them better turned out to contain the Hepatitis C and HIV virus. This part of the film alone is heartbreaking to see. Strong young men turned into feeble sick people. But that's not even the worse part. The fact that the drug companies, government regulators and some doctors knew, and still administered the products to patients is infuriating. I was in complete shock watching this film and angry for weeks. It took me until today to calm down enough so I could even write this blog about it!
You see I am one of the lucky ones. I was born in 1983 and began getting frequent blood transfusion ever since then. The Canadian blood supply was tainted between 1980 and 1990. So the fact that I have no contracted one of these virus if not both is a complete miracle.
One of the main points I feel the film was trying to make is that THIS WILL HAPPEN AGAIN! If we do not monitor the blood supply and if we allow people to value money over human lives then we will find ourselves in this same boat again.
This may seem like a Hemophilia related issue but it is not. Many people use the blood system throughout their lives and it is up to all of us to ensure it is safe for all.
To understand the impact of this issue watch the Bad Blood Documentary.

Painkillers

So, I've been asked a few questions lately on http://twitter.com ( you can follow me @RyanneSiobhain) about painkillers. Good old painkillers.
Sadly, being a Hemophiliac has caused me to need many, many painkillers over the years. My favourite is percocet. Morphine is stronger technically, but I like percocet because it doesn't make me nauseated like morphine, codeine, Demerol and dilaudid.
However, not all pain is created equal. For example, when I had a chest bleed I found that over the counter robaxacet worked better then morphine.
Sometimes, ice, heat and rest can also help.
There are also going to be times when pain killers just won't work. About three years ago I had an iliopsoas bleed. It was the most excruciating pain I have ever felt. A CT scan revealed that I had a muscle bleed that was bigger than a fist. This mass was irritating my muscles and nerves to the point where I thought I was going to go crazy from the pain. All the morphine in the world did not seem to even take the edge off. Finally they gave me Fentanyl, it's a very strong narcotic and it's actually used sometimes during child birth.
This medication helped take the edge off but I was still in a huge amount of pain.
Painkillers are not the answer though, they have a lot of side effects and can be highly addictive. Sometimes the use of these medications can not be avoided in which case I would recommend taking them in moderation and only when absolutely necessary. Of course, I am not a doctor just a patient with 27 years of experience!

Sad

So, it's been about three months since I lost my angel Charlie. Lately, I've been feeling a lot better but the other day I just stayed in bed all day. I woke up to eat and shower and then just went right back to bed. I wasn't crying or anything like that I just felt awful and totally drained. It could be because I did have infection and I was worn down but some days I feel like I will never be completely happy without Charlie. I always dreamed of coming home with my children and how happy it would make my mom and Charlie but that is a dream that has been taken away from me and I don't know how to get over it. Mind you, since being diagnosed with Hemophilia I have had many dreams taken away from me. I'm sure I don't need to list them but just in case you were wondering, employment, travel and every day normal activities. I guess those didn't hurt me as badly because they happened slowly over time. But death is so final. Also, I think with my illness I feel like I can control it to a certain extent, for example I can live the healthiest lifestyle I can which will help a lot. However, when Charlie passed away no one asked me if it was ok and I had no control of it what so ever. I've been replaying the last 5 weeks of his life over and over again in my head. I sometimes think that maybe if I had more money I could of brought him to a better hospital or maybe if I went to more masses he would still be with me. Just like my set backs with Hemophilia, I guess I have to realize that I can't control what happened, but I can control how I move forward with my life and Charlie would definitely want me to have fun and live life to the fullest just like he did!

Courage

So, I spent the weekend in Toronto for the National Youth Committee retreat. It was wonderful! I could spend a lot of time talking about all the great speakers and all the things I learned but, I have to talk about the most interesting comment I heard. It was during one of social nights. The comment came from a person who had never attended a Canadian Hemophilia Society event before and was so enthusiastic throughout the whole weekend. At the party he said to me, "you know what Ryanne, I think people with Hemophilia not only have normal lives, but I think they have event better lives then everyone else." He explained that because we are often so sick that when we are healthy we really make the most of it!
I was also impressed with every ones careers. There were flight attendants, teachers, engineers and journalist. Everyone seemed to be going after what they wanted out of life and didn't let their condition limit them.
Since speaking with everyone I have decided to look for full time work! I have a communications degree and a journalism diploma and I think it's about time I start using it again. I may get sick again and have to quit but if I try to work full time at least at the end of the day I know I tried my best!

Hemophilia Conference

So, this Friday I am off to Toronto for the National Youth Committee conference for the Canadian Hemophilia Society. I am really looking forward it as I get to see a lot of my wonderful Hemophilia friends. I also have to speak at this session which I really enjoy so there is lots of things I excited about. However, I am also a bit nervous about it. Every time I travel I am always afraid of getting sick, either an infection of some sort, a cold, a flu or a bleed. I know that is very paranoid of me but on the other hand, it's not entirely unlikely that I would get sick. I haven't had a bleed since July so I'm kind of on the count down now until my next bleed. Not that I want to have a bleed but it is one of the only things I count on!
In anticipation of getting sick I am bringing my travel letter which outlines what to do in case I do have a bleed. I'm also bringing pain medication and about four different types of antibiotics!
Maybe I am being a bit of a worry wart but when it comes to Hemophilia I think it's better safe than sorry!

Ups and Downs

So, I took a week off to rest up my knee and I am happy to report it is feeling 100% better.
Today ends a week of doctors appointments for me and I am happy that it is finally Friday.
Tuesday I met with my gallbladder doctor and he was amazed that my gallbladder is actually functioning at a normal level. Not just normal for someone with gallstones but normal normal! I was really glad to hear that. Also, he prescribed a drug to me that will hopefully break up the gallstones which means no surgery. I am praying this drug will work for me and I will be free from gallstones.
the next appointment was with my dentist. My wisdom teeth are still causing me problems but I am getting cleanings once every three months so hopefully that will keep them clean and they won't cause me any more pain. Also, I will avoid another surgery.
I am really finding it hard to find a balance lately. I feel like I am always at the doctors and I am not really doing anything to cause it. It's not like I am out water-skiing and playing rugby on the weekends. I guess I should know by now that the life of a Hemophiliac is full of ups and downs and I will just have to get use to it!