March sadness

So, I went for a follow up appointment today to look into these constant infections I've been having.
I am going to be referred to a urologist and have some further testing done. I'm really not looking forward to that because it seems scary to me but on the other hand I am getting sick of always being on antibiotics and missing work.
Hopefully this illness is behind me at least for a couple of months. At the moment Zane is still off sick with his knee injury and he has the flu so it's rough going around our house for a couple of days.
In the meantime I am drinking lots of water and cranberry juice.

Better days ahead... I hope!

So, I spent all day Friday in the hospital getting a blood transfusion. I received 4 units of fresh frozen plasma for a severe kidney bleed. Half way through my transfusion I got really sick and broke out in hives so I was treated with benedryl. After 9 hours in the hospital I came home and noticed I had broken out in hives again so I took some more benedryl and spent the rest of the night in an out of sleep.
I am still taking antibiotics but I am still in a bit of pain in my lower back and I feel really tired.
Also, I am a little bit upset about St. Patrick's Day as Zane and I had planned to have our friends over for a little get together. There's nothing I can do about it of course but I am a bit disappointed.
I've noticed that I have been in the hospital every since month for a transfusion since November. I am really not 100% sure what i going on as I normally don't go in that often. I was hoping that by working part time and eating healthy and exercising I would start to feel better but alas that is not the case at all.
Part of me thinks it could be the winter. The winter months are always harder on me than any other time of year.
Whatever it is I hope it ends soon because its interferring with my work, my social life and my over all mental health and quality of life.

March Madness

So, a few days ago I started having pains in my lower back area and I assumed it was from the gym as I have been working out a lot more lately.
Last night I noticed trace amounts of blood in my urine so I went to the doctor yesterday to get so testing done and it turns out I have yet another urinary tract infection. I started taking antibiotics yesterday and I've noticed this morning that the trace amounts of blood have turned into much more noticeable amounts so I am heading into the clinic as soon as it opens at 8:30 am and I am assuming they will give me plasma. It is
Very fustrating to me how a simple urinary tract infection can turn into such an ordeal.

Snow Day

So, today we had a snow day. The roads were bad and we got a lot of snow in a short amount of time so Zane and I decided to spend the day resting and relaxing. I also took the time to do a lot Hemophilia Society work, I blogged, spoke to national twice, completed an agenda for our Volunteer Appreciation night on Friday, wrote out Thank you notes to our board members and corresponded to e mails. Because I am involved in so many committees a little bit of work for each committee turns into a lot. With that being said it can be a lot of fun too. We are having our Volunteer Appreciation Event on Friday which is always really nice, wine and cheese and mingling.
I also spent the day making some healthy food for the week. I am trying to lose 2 pounds a week for the next 4 months.
We shall see how it goes but I am praying for good results I am counting calories and working out 4 days week.
Only time will tell.
In other news my arm is sore and I am praying its just muscle pain from the gym and not ANOTHER bleed.

Birthday

So, today is my 29th Birthday. Birthdays are always a hard for me because I'm never around all of my family. Also, when I was a child my mom use to throw me the most elaborate birthdays so as an adult its hard to live up to all those amazing parties.
Another thing that comes up for me on my birthday is my illness sometimes I look back on the past year and how many bleeds I've had and I wonder and worry about how many I'll have this year. Don't get me wrong, getting all kinds of nice gifts and getting to eat cake really helps but it's always there in the back of my mind.

Rare Disease Day

So, February 29th, 2012 marked Rare Disease Day. A rare disease is considered to be one that affects less than 1 in 20,000 people. Factor 5 Hemophilia, the wonderful rare disease I have, has only 150 cases reported worldwide thus making it in my opinion very very very rare.
Being "rare" or having something rare about you had a magical appeal to me when I was a kid. I thought it was cool or special to have something that nobody else has. However after years of blood transfusions, pain, anger and confusion Hemophilia Factor 5 is no longer magical to me but a torture and a source of great pain for me.
With that being said I have a wonderful fiance Zane. I don't know if I mention that enough in my blog but he amazing and he decided that we should celebrate rare disease day so instead of being sad about having this condition I got to celerate by going out to our favorite restaurant together and doing a little bit of shopping at the mall.
Anyone who suffers from a rare disease or any disease for that matter has without a doubt a ton of obstacles in front of them and reasons to be upset with their lot in life but today I am happy to say I can see the positive and I feel very blessed.