ANSWERS!!!!

So, remember how I've been complaining about shortness or breath and tight chest and all that? Well, today I found out my ALPHA 1 level is low. Apparently this isn't a very common test and its very specialized and all that but anyways I googled the symptoms of this and guess what they are? Shortness of breath and tiredness! All the things I've been experiencing lately so while its not great, its good to know theres nothing seriously wrong with me. For the next month I plan to pump myself up with as much vitamins and nutrients as I can and get my levels back up so I can start feeling better.
The only down side is I only found this out after talking to my hemophilia clinic, two separate family doctors and going into emergency for 5 hours. So sometimes you really have to advocate for yourself and keep on searching and trying until you get some results.
Like I said having a chornic illness is a full time job, the worst, most  painful, least paying full time job!  

Ups and Downs

So, Friday I spent the day in the hospital. I went in because I was having chest pain and my blood pressure was very high. 

After an EKG, Blood work and Chest X ray the doctors discovered that I simply have a really bad flu.

I am finding that having a chronic illness is honestly a full time job. This month alone I have 9 separate appointments at different offices, different times all across the city.

For example Thursday I am going in to get a 24 hour blood pressure monitor put on. My family doctor ordered this so that we can see whats going on with my blood pressure because in the last few days its been 150/80, 120/80, 160/92. Just all over the place. 

I am not surprised that I've been having a few medical troubles. This past year has been has been extremely difficult to say the least. We've had a family member diagnosed with terminal cancer and another family member diagnosed with a chronic illness.

I wouldn't wish this on anyone. Illness in any capacity is exhausting and heartbreaking.   

Since this all started last April Ive had, stress induced hives, bleeds and many days where I just want to hide under the covers. 

I think that's why its taken so long for me to blog. Its hard to write or think about anything but illness. 

Here is a picture of me in a beautiful blue gown in preparation for my chest x ray and EKG, the next picture is my IV which took three tries to get in, the next is my red hand from cutting up beets as they help settle the gallbladder and the last picture is some condensed beetroot juice that tastes absolutely disgusting. 

Gallbladder problems

So, my gallbladder has been bothering me a lot lately. Not a full on Gallstone attack because those are brutal but Ive been uncomfortable and queasy. 

Today I threw up outside of the bank and at the grocery store so that was interesting but that's what happens when you have gallstones. Now as for how to solve this here are my options:

I can keep the damn thing and just live with the attacks. The problem with that is its safe to say the attacks will eventually get worse and more frequent and its possible that a stone could get lodged in one of the ducts and that could cause infection and all kinds of problems.

The other option is I can get the gallbladder removed. The problem with that is of course surgery for anyone is risky but especially for me, I am a bleeder and I have no concentrate factor. The other problem with that in my mind is that I've never had surgery before and I've always been told I can't have surgery. Never tell a child they can't do something because here's the thing, they will believe you! So many things I do or don't do in my life are based on things that people told me when I was a child that are really not even true but they are so ingrained in my mind. 

The other option is taking the medicine that will dissolve the stones. The problem with that is I'm not crazy about all of the side effects of the drug and once you stop taking the drug the stones will just come back. So at the moment I am not sure what to do. 

My plan of action is to consult with the surgeon in April, consult with my Hemophilia clinic in March and consult with the GI specialist in May. Normally I always side with whatever my Hemophilia clinic says I feel like they know me the best and have the most experience with my particular situation. Of course I'll be praying and consulting with the man upstairs too!

I'm curious has anyone in the bleeding disorder community had this problem?

Old woman winter

So, the winter is always a rough time for me, February in particular. The winter is just long and cold and hard on the body. Anyways, my latest trouble has been with my gallbladder. I started getting pain about a week ago and went to my doctor. On physical examination he decided it would be best to get an ultrasound. The ultrasound didn't really show us anything we didn't know. I have gallstones and they bother me every now and then. Right now the action plan is to follow up with a GI specialist and see if they can maybe dissolve them with medication or break them up small enough so that they can be passed.
Another wonderful development we noticed is that my blood is raised. Its normally 120/80 always all the time forever but lately its been 150/91, 138/85 so I am going to be put on a 24 blood pressure monitor and then we will go from there.
In the meantime I am going to get on with my life as much as possible. The best thing for gallbladder problems is a clean healthy diet including BEETS! Beets are wonderful for the gallbladder so I've been roasting them and eating them as much as I can.
So if you have gallstones and can't get them removed please let me know and I'd be happy to share my beet recipe with you, its so good they barely taste like dirt.

Hemos Unite!

So, I had the pleasure of talk with Matti Vann a weeks back and I am so excited to listen to the finished product.
Matti Vann is the mother of a Hemophiliac, activist, and all around great person. She was so kind to have me on her show and has inspired me to get back to blogging more.
To learn more about Hemos Unite, please visit Hemosunite.com.
You can listen to me blabbing on about hemophilia on her site as well.
I love talking about Hemophilia its one of the only topics I feel like an expert on and I love the idea of helping others just by doing something as simple as sharing my story.
I love volunteering and speaking at events and I honestly wish there was an opportunity to do more of it.
In the meantime I am still dealing with the gallbladder pain and I had an ultrasound tomorrow. I am going to the doctor tomorrow to get the results so we shall see what he has to say. Until then I will enjoy listening to the podcast!

slight setback

So, I've been complaining lately that I haven't been able to blog in a while so today my body hast decided to act up on me. Sunday, I started having stomach pain and by today it was so bad I had to go to the doctor. He said that its a gallstone attack so I am off to the doctor tomorrow to get an ultrasound. 

I've had gallstones since I was 12 years old and I am so lucky that I've only had about half a dozen attacks in my life. The thing is my hematologists don't want to remove my gallbladder unless its absolutely necessary. So as long as I'm only having a few minor attacks here and there I think I will hang on to them. In the meantime I am very uncomfortable and I'm really looking forward to getting this ultrasound so we can see if the stones are blocking something and then we can decide what to do from there. Last time I was given a blood transfusion and antibiotics so in the grand scheme of things not the end of the world. 

I'll have a blue Christmas without you...

So, my husband and I just finished putting up our first Christmas tree in our new house! We have a fire place to hang the stockings, a big living room for the tree and a beautiful mantel for the nativity scene. We are beyond blessed and I am very much looking forward to Christmas. Yet, I find myself feeling homesick every Christmas.

Perhaps this little joke will explain it:

"How do you tell which people are Newfoundlanders in Heaven?"

"They are the only ones who want to go home."

It's certainly not logical to long for a place that is 3000 miles away. It is cold and windy and damp and dreary. It costs more than 1000$ to get there and the journey is treacherous but every Christmas I miss "home."

I guess if you do the same thing every year for Christmas for 25 years then no matter what you do its just different, not bad but different.

They say that once you leave home you can never really go back and I guess its true. 

Even if I were to go home now its not the same, time has passed, and people near and dear to me have passed away. 

One of the things that bothers me the most is the main reason why we don't travel to Newfoundland for Christmas is because of my Hemophilia. 

One year we travelled home and I had a cyst rupture and bleed. I was in pain, I was bleeding internally and all the doctor in Stephenville would do, and this is the honest to gods truth, is give me a shot of vitamin K. It did ABSOLUTELY NOTHING. It was a nightmare. 

It was very scary for both me and Zane and thus we haven't returned to Newfoundland for Christmas since.

This year, has also been challenging,we've had two family members diagnosed with illnesses and of course my health hasn't been perfect either.

I am praying that Christmas will be wonderful and continue on into the new year! In the meantime I am gonna focus on all the good things we have in our lives.

A picture of Zane and I during our last visit to Stephenville for Christmas.