What the heck is wrong with me

So, here are my symptoms, I throw up at the drop of at a hat, I am tired all of the time and I am out of breath just from walking up the staires.

I've gone to my family doctor about it and I've gone to the emergency room about it. I've had an EKG, Chest X ray, IV fluids, Ultrasound, blood work and urinalysis and we haven't been able to find anything yet.

Anyone have anything like this? we've tested everything I can think of and I'm all out of ideas.

On a side note I've finished Birthday Week. It was absolutely wonderful! I am so lucky to have Zane he always makes sure I have fun no matter whats going on.

The remedy is worse than the disease!

So, I am currently wearing a 24 hour blood pressure monitor and it is absolutely terrible. That sounds dramatic but the darn thing goes off every 3o minutes and its noisy and it hurts and my arm is covered in little red dots (petechiae).

Here is a fun fact for you, an older hemotologist once told me that back in the day they would diagnose the severity of Hemophilia they would measure the amount of petechiae or little red dots left on their arm after a blood pressure reading. If the amount was bigger than a quarter then the person was considered severe. How's that for old school?

Anyways, I'm trying my best with this monitor but I can guarantee if it wakes me up in the night I will be be taking it off. 

I wish there was a gentler way to diagnose things. I'm at the point now where even blood work leaves bruises and veins are hard to find and its just annoying. I am praying for a factor 5 concentrate and an easier way to diagnose things. 

What is your most hated diagnostic test. Mine is anything involving barium and needles.

Happy Birthday to me!

Wow! I am 32! I am not sure how that happened but here I am. I don't always love getting older sometimes I'd rather say I'm 28 than 32 but at the end of the day growing older is a blessing and even though I've had a lot of bumps along the way who am I am to complain? 

Well I gotta complain a little bit otherwise I wouldn't really have a blog! I am still feeling a bit stomach sick and tired but overall I feel great. I feel so blessed today to have so many birthday wishes, presents and cakes!

There was a time when I was very very sick and in the Janeway Children's Hospital for my 13th birthday. 

I've attached a picture of all the cute cards and gifts while I was there. I actually still have all the cards and letters from that time.

Anyways, Speaking of growing older tomorrow I am going to get hooked up to a 24 hour blood pressure monitor so we shall see how that goes!

Thank you for all the birthday love! I really appreciate it.

Poppy Priddle

Here is a picture of my Poppy, John. He passed away 2.5 years ago. It is still hard to believe sometimes I just think hes back in Stephenville reading the newspaper and listening to the radio.
My poppy was a lot of things including a very talented painter. He taught himself how to paint with oil paints and continue to do so up into his 80's. Even when parkinsons disease set in and his hands began to shake he continue to paint for as long as he could.
Today is his birthday, the day before mine and in honor of his birthday I have decided to make a book out of all of his paintings. I will start now and hopefully have it completed by his birthday next year.
The paintings have been divided up between the different family members and I'm honestly not sure how many there are but I am really excited about this project!

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?