Merry Christmas Everyone!

So, I just wanted to take a minute and say Merry Christmas to all of the wonderful people who read my blog and all of the people affected by bleeding disorders.

May you all have a happy and healthy Christmas surrounded by your loved ones.

 

The 12 blood days of Christmas

So, its been well over 12 days that Ive been having nose bleeds. They range from once to three times a day and from light bleeding to very heavy.

In an effort to stop the bleeding ive tried Cyclokapron, a humidifier and coconut oil in my nose but none of this has worked. 

I went to see my family doctor and she suggested cauterizing it but I'm really not convinced that taking a hot tool to my nose is gonna help.

I thinking the best bet will be four units of fresh frozen plasma.

I am going to my Hemophilia Clinic tomorrow for a check up so I will see what they have to say. 

I've included this awesome illustration by my daring friend, Silvana Moran to highlight how i'm feeling. 

Please visit her at behance.net/radish

Nose bleeds are awesome

So, ever since I got back from Newfoundland my nose has been bleeding on and off. Nothing serious, just a little trickle here and there. However, last night I had a full on nose bleed it woke me up out of bed and I had tissues to my nose for about an hour. I haven't really had a bad nose bleed since I was about 10 years old. Ahh nothing like the taste of blood in the back of your throat to bring back childhood memories. Anyways, Transexamic Acid or Cyclokapron is a wonderful drug, you take three pills, three times daily and it helps to stop the bleeding. (it doesn't actually stop bleeding it helps to stabilize a clot once it is formed.)

This drug works great for me it sometimes gives me a stomach ache so I sometimes cut down the dose especially if the bleeding isn't heavy. 

It is a wonderful drug but very expensive almost 1.50 per pill and when you are taking 9 pills a day for one or two weeks it can be very pricey. I am very blessed and I have a health care plan so I don't have to pay anything but there are thousands of Hemophiliacs who can't afford this potentially life saving drug. That's why every Christmas I urge everyone to donate to SAVE ONE LIFE. This organization helps Hemophiliacs who can't afford factor or blood transfusions. Hemophiliacs who do not receive adequate treatment can have life long problems or even bleed to death so please consider sponsoring a child or donating at http://saveonelife.net/.

On another note, if I have to be bleeding from somewhere I would definitely choose a nosebleed because you can easily see how much blood you are loosing and they aren't painful.

So I really can't complain. I'm gonna watch a Christmas movie and wash my Cyclokapron down with some cranberry cider!

Here is the deepest secret nobody knows

So, about a year ago now my Momma was diagnosed with Parkinsons disease.

It is a very frustrating, scary disease. 

I feel like my mother is slowly slipping away from me and there is nothing I can do about it.

I just got home from a two week visit with my Momma and it was so hard seeing her in pain and not doing all the things she would normally do.

My mom and I have faced a lot of hard things together, my bleeding disorder, my step father Charlie passing away and now her illness.

I think everyone can agree that moms cant be sick! They are the family rock, they are always there for everyone else and now that the tables are turned I feel helpless and sad. 

I want my momma to be happy and healthy and live to be 507 years old!

and maybe she will. 

Until our next visit together I am praying for her and educating myself as much as I can about Parkinsons disease.

Happy Thanksgiving!

So, today is Thanksgiving here in Canada and I have to say there are many many things I am thankful for.

First of all I am so thankful to god that I am healthy this weekend. I am also thankful for my darling husband Zane. He is so helpful and supportive I don't know what I would do without him. Last but not least I am thankful for our awesome friends and family. We spent the weekend with are friends and had a great time visiting with them. We also have an amazing family that we love very much.

Sometimes when I am sick it doesn't feel like it but I know we are very blessed. 

I hope everyone is having a great long weekend and that they are happy and healthy.

I've attached a picture of Zane and I and our two dogs Lily and Jade. Hopefully next year we will add to our family but that's a post for another time!

Priorities

So, I've had a lot of healthy concerns over the summer including, mysteriously dropping hemoglobin, a wrist bleed ad pneumonia twice! Now that the fall is here I am catching up on a lot of appointments. 

Last week I went to visit my dentist and my wisdom teeth are of course a concerns but my dentist seems to think that as long as I keep my teeth really clean and healthy the wisdom teeth will eventually grow in and now cause too much trouble.  I am very happy to hear this because dental surgery sounds like a nightmare to me. I also had the joy of going for a pap test. It's a test that I really really hate but it is so important to have done yearly. While I was at this clinic my doctor recommended I get the HPV vaccine, Gardasil  I always thought this vaccine was only for those under the age of 26 but it has been approved for women up to 45 years of age. 

This vaccine helps prevent against almost all HPV virus, which can lead to cancer. 

I am not an expert in this my any means but I've decided to go ahead and get the vaccine. It comes in three doses similar to the twinrix vaccine. 

Its definitely something worth talking to your doctors about. 

For more information please check out hpvinfo.ca.

University of Calgary Presentation

So, on Friday I have the opportunity to speak to the first year medical students at the University of Calgary. I have done this in the past and I must say I absolutely love it. I love talking about myself and I love talking about Hemophilia. I am also very happy that I can turn all the terrible medical experienes I have had into something useful!
The format is I speak for 15 minutes and then the students ask me questions for 45 minutes. I love the questions they ask its always interesting and fun.
Ive attached a picture of myself and Dr. Goodyear.
I've also attached the notes I used for my presentation.

Thank you so much for having me here today I really appreciate  the opportunity to talk to you.

My name is Ryanne McIsaac. I am a severe factor 5 hemophiliac with less than 1%.

I was born to a healthy family in a small town in Newfoundland. 

I was diagnosed at 7 months old after a bump on my head turned into  a large hematoma and 9 months in the hospital.

It was very difficult to diagnosed because My parents are healthy and I have two healthy older sisters. 

After being diagnosed I was often treated for ankle bleeds, nose bleeds and every time I lost a tooth.

For the first 30 years of my life I was treated with Fresh Frozen plasma. 

For small bleed I receive 4 units for larger bleeds I have received up to 50 units. 

I am currently treated with Octaplasma when it is available.  Octaplasma is a detergent treated plasma and is suppose to lessen the risk of blood born pathogens and reactions.

Throughout my life i have estimated that Ive had more than 2,000 units of blood and plasma and have spent more than 5 years in the hospital.

Small bleeds have included, wrist and elbows they are easy to treat with typically 4 units and don't require too much recovery time. 

The largest bleed I have had so far was when I was 12 years old, I developed an ovarian cyst that ruptured and bled into my abdomen, I was in extreme pain and I was air lifted to the children s hospital where I spent a whole year and received more than 150 units of blood. 

Recently my most medically interesting episode started in February I started to become very tired and short of breath. After visiting my family doctor it showed that my hemoglobin had dropped to around 100. 

I booked in with the Hemophilia clinic and we found that my hemoglobin had dropped again.

I had no signs or syptoms of a bleed. 

I received 4 units of red blood cells and follow up blood work revealed it had dropped again. 

I continued to be tired and short of breath. by the time I went into Emergency my hemoglobin was 55.

we tried to look for a bleed but after a CT scan a Colonoscopy and endoscopy and bronoscopy all we could find was that my lymph nodes were very swollen. luckily the biopsy came back negative but I was diagnosed with Sarcoidosis.

We never did find a definite cause but we suspect it was a bowel bleed.

The sarcoidosis diagnosis really bothered me because I started to feel like, well am I just gonna keep getting worse and worse. And Sarcoidosis is very vague. Right now my symptoms are sweating and fatigue, but again its a very confusing condition.

I really feel its important for me to advocate for myself as a patient and to know as much abut my illness as I can however I will say this is something that I find difficult. 

As a child you are taught that you must always treat doctors with respect and that they are always right and you learn that you are sick and they make you all better. So you grow to have this relationship with your doctor and its sometimes hard to disagree with them but I am learning each time I have an episode that there are ways to advocate for yourself the right way.

The other obstacle comes in when you factor in, pain, lack of sleep and pain meds. Its sometimes hard to not become frustrated and dismayed when a doctor says something you dont agree with.

I think the absolute best thing you can do as a physician is to have a little bit of compassion for the patient, and listen to the patient, I know you are taught that you are the expert ad most times you are, but have found that when it comes to rare conditions sometimes honestly the patient is the expert.

The hardest part about having Hemophilia in my opinion is the way it affects the people in my life. 

I had to miss my moms 65th birthday, my sisters wedding in las vegas and lots of birthday parties and events. 

I also hate the stress it puts on my husband, when I get a bleed I normal sneak out of bed and go on the couch and the look on his face when he finds me in pain breaks my heart. Overall it puts a lot of stress on my family and I just hate it, I wish I could just have hemophilia and not have to make the people around me suffer. 

Thankfully I have a wonderful support system in my life, my husband is very supportive, he has learned all about my condition over the years and is really a great advocate for me. 

I also have a large circle of family and friends that have helped me get threw the ups ad downs of hemophiliacs

Another thing I feel is important when coping with a disease is to meet other people who have been threw what you have been threw so I decided to volunteer with the Canadian Hemophilia Society, over the past 8 years I have been Co president of the national youth committee, President of the Southern Alberta Chapter of the Canadian Hemophilia Society  and a member of the patient advisory committee. I also have a blog called Hemophilia is for girls dedicated to raisin awareness for womans and bleeding disorders. 

up in smoke

So, there are some fires in the us and the smoke has traveled to Calgary turning the city into one big giant campfire.

Because of my Sarcoidosis I am in so much pain, my throat is sore, my chest is sore, I can't stop coughing and I can't sleep. 

This whole sarcoidosis thing is new to me and I have to say I hate it. I don't know how to treat it and I absolutely hate coughing all the time, its loud and annoying and painful.

Anyways my darling husband brought me home a diffuser and I have to say its really helping. Ive also been using a humidifier, cough drops and lots of water.

This new diagnosis does stress me out i must say, its so vague and the symptoms can become way worse or completely go away.

Don't get me wrong, I would much prefer sarcoidosis to lymphoma, (the mimic pretty much the same symptoms.)

But at the same time I hate sweating all the time and being short of breath.

Hopefully this will be the end of chronic illnesses for me. 

In the meantime I will try and look at the bright side, I have a wonderful husband to keep me company while I am stuck in the house hiding away from the smoke.

Epicure Adventures!

So, since the last time I wrote I had an arm bleed and a leg bleed. They were very painful but easy to deal with and only required 4 units of octaplasma and one day in the hospital so I can't complain.
Zane also injured his knee so he has been on crutches for the past three weeks. Needless to say, it hasn't been our best summer yet but we are making it work.

I haven't blogged in a while because honestly I need a break from thinking about my illness. This summer it really started to consume me and I am praying that I will now have a few hospital less months. I have been in the hospital every month since April which has been my longest stretch of separate bleeds to date.
Anyway, switching gears to something positive I have become an Independent Epicure Consultant, which simply means I am selling Epicure. Epicure is fast and delish spices, dips and meal kits. So far I am really enjoying it. For a long time I have been looking for something that will allow me to work and my own pace and on a schedule that works for me.
I will let you know how my progress goes!

If you would like to learn more about Epicure please visit my website at http://ryannemcisaac.myepicure.com/

Here we go again

So, I started having chest pain a few days ago and around Thursday I started being short of breathe so I gathered up all of my courage and went into the emergency room. I say courage because going to the emergency is nothing short of a torture test for example, it took them 11 tries to get an IV. 11 tries! My arms are black and blue and I am exhausted.
Eight hours later my CT scan showed that I have pneumonia so I am taking a course of antibiotics.
This isn't a big deal in the grand scheme of life but here's the thing that has been bothering me since February. My Hemophilia Clinic has been telling me to go to Emergency and anyone who has hung out in emergency knows that it is torture.
Id much rather go to a place where the doctors are experts, I see them right away and I don't have to wait around in a crazy emergency room for 8 hours.
But lately they've been telling me to just go to emerg and it is causing major stress for me and my family. After all, one of the main reasons we moved here is because of the Hemophilia clinic.
I can't tell you have frustrating it is to have a rare complicated disease and feel like you are being pushed away but literally the only people who equipped to take care of you.
I go to emergency and the doctors are rude, they look for blood clots they think I have factor 5 leiden which is the EXACT opposite. I explain and explain but its like it doesn't compute.
Anyways I am going for a meeting tomorrow with my clinic director so we will see how that goes but I honestly feel like it won't make a difference and I just have to take what I can get. I mean what can I really do to change it? And to be honest I'm already so tired I just want to have good care.

Love and hard times

So, I thought I would take a minute to write about my illnesses that have been going on for the past two months. 

It all started with me feeling tired, I thought maybe I was depressed or something but I just felt tired all the time and then eventually it go so bad that I couldn't walk to the top of the stair es without being completely out of breath. 

I went to my family doctor, I went to my hemophilia clinic, I went to emergency, I couldn't get anyone to do anything about my illness until eventually my father came to get me and took me to emergency.

My hemoglobin was 55, I had pneumonia, I had swollen lymph nodes in my chest and I was bleeding internally so needless to say I was in rough shape.

I was treated with about 6 unit of red blood cells and 10 units of Octaplasma. 

My doctors think that I had a bleed that caused my levels to drop and then when we treated it it disappeared.

Just to be sure they did every test I've ever heard of a endoscopy, bronoscopy, colonoscopy, EKG, Chest X ray, ultrasound and two CT scans. 

Everything came back normal except the CT Scan, they think I have a lung disease called sarcoidosis which I will explain if I actually get officially diagnosed with it. 

I see a lung specialist in May to find. 

Anyways, I really wanted to blog about this because in 32 years I've never had a bleed without pain so I'm still confused about how I had such a huge bleed (enough to drop my hemoglobin 5 points a day) without noticing blood anywhere and no pain.

I find this very scary to think you could be bleeding and not even know it? 

The other scary part was the biopsy. I could tell by my doctors face after my CT scan that things weren't right and thats when they said they wanted to do a biopsy because my symptoms were consistent with lymphoma. 

So overall it was a hellish week, not to mention the terrible reaction I had to propophol, the nausea from the morphine and the joy of drinking more than 8 litres of contrast dye. 

The worst part of the week was the fact that it kept me away from seeing Della but I know she understood. She was always so understanding and respectful of my illness. She never wanted me to push myself or stress about anything especially her, she wanted me to be happy and healthy.

The following are some photos of my adventure.

1. My oxygen mask thing

2. My red blood cell transfusion

3. My iron transfusion its black! who knew?

4. A moment of rest in the busy emergency room

5. Me with oxygen 

Momma D

On Monday morning I got the call I have been dreading for a year. My husband called to tell me that my darling mother in law Della passed away. I would say, she lost her battle with cancer but I don't think she lost. She fought cancer three times in her life and I think in the end she agreed to go.

I don't want to write about it but I feel like maybe if I get out how terrible I feel maybe I will feel better but, I suspect I could write a thousand pages and still feel sad about Della. 

I met her 10 years ago when Zane and I started dating and for some reason right from day 1 she treated me like I was so special and such a blessing to have around. I loved the way I felt around her because she made me feel like I could do no wrong and that I was important.
When I think about her I picture her at our wedding. She wore this beautiful white dress and she honestly looked like a little angel. She seemed so happy that day and helped us with so much even though she had major surgery just 4 months earlier. I can't imagine the strength and courage it took suffer like she did and she did it with grace and dignity and a smile on her face.
The last time we talked she called me while I was in the hospital and asked me if I need anything! If I needed anything? She was in the hospice fighting for her life and she wanted to know if I need anything? And she asked if Zane knew, cause sometimes her and I would have small secrets from Zane just so we wouldn't worry him.
I can't believe the only person in the world who loved Zane as much as me is gone.
I could never thank her enough for raising such a wonderful man.
I will say I am not sitting here wondering if Della knew how much I loved her and I am not wondering how much she loved me. Della loved with her whole heart and I know she knew that I thought the world of her.

Happy Easter

So, this is gonna be quick because I don't have the energy to do too much these days.
We discovered that I had low iron back on March 6th. So last week I had two units of red blood cells so we were very excited to see my levels go up but sadly they went down! I don't know whats going on but I get more and more tired and more and more frustrated each day.
To top it all off all of my friends and husband are in Mexico! I am so happy zane gets to go and I pray my friends have a wonderful wedding but I just wish I could go to!
I'm having a very lonely and lazy Easter.
My hope is that tomorrow they will admit me and pump me up.
I'll keep you posted!

Secrets and Lies

So, Secrets and Lies is a TV show on ABC. It is the most perfectly named TV show since a recent episode has a character describe Hemophilia as "A nasty bi product of incest."

That is a complete lie.

When I first heard about this I was a little mad, I thought this isn't true, why would they say that and is hurting an entire community of people really crucial to the plot development of this show? 

Anyways, after a few days I tried to forget about it because as I've mentioned before I have low iron at the moment and I am feeling completely exhausted. 

But this whole thing brings up some very painful memories for me.

When I was a kid I was watching Degrassi Junior High with my older sister. I was maybe 8 years old and one of the characters was told he could possibly have AIDS. He said something along the lines of "I can't have AIDS only gay people and Hemophiliacs have that." Now looking back that was the first time I have ever heard the word Hemophilia on TV and it was mostly likely the first time I heard of AIDS and even though I didn't know what it was I knew it was bad by the way he was acting.

Isn't that a terrible thing for a child to see on TV? Isn't that a terrible thing for other people to see and maybe assume that about somebody?

That's the problem I have about this comment on Secrets and Lies, I don't need an apology from ABC I am old enough now and I have been to many conferences and I know how Hemophilia is passed down genetically.

But what I do need is for any young adults out there who have seen this show or heard of this to know that just because a person has Hemophilia doesn't mean their parents were brother and sister as it states on the show. That is just rude, uneducated and not true.

March is Hemophilia awareness month and this is a terrible reminder that we obviously as a community still have a lot of educating to do!

Coming around

So, I finally found out why I have been feeling so terribly lately.
My Hemoglobin, albumin and ferritin levels are low. Low Iron to put it simply.
The thing about low iron is that it helps carry your oxygen so thats why I've been short of breath and completely exhausted lately.
I'm so happy to finally know whats going on. It was driving me crazy.
I'm really glad its an easy fix but it does take a while for your iron to build up so I will be taking Iron pills for the next 90 days.
Iron pills aren't terrible but they are pretty gross, they hurt your stomach and make me nauseous but its much better than being exhausted from just walking to the top of the staires!
Well thats it for me I would write more but I am too tired!

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?

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.