The News; Denied Federal Assistance 2016

imageI was contacted by a local news paper. They had said they wanted to write about my story after seeing my gofundme. I have to admit at first I didn’t want to go public with my story.

Yet, when I put a little more thought into it I realized this was not just an opportunity for me to address CPP. It was also an time to talk about rare disease in the media.

I did the interview for the article back in June. The interviewer Adriane Chamberlan did research for a month and the article came out on the 26th of July.

You can find it here:

http://www.timescolonist.com/news/local/esquimalt-woman-disabled-but-denied-federal-assistance-1.2309752

After the paper came out I received messages from local people and people on the main land. Many outraged as to how I do not have disability, many also experiencing a similar situation of being pushed aside in a sense.

I want the system to change. I don’t want people with rare diseases to slip through the cracks. Not receiving the help they need can be deadly.

I admit at times I skip days not taking my expensive meds. Ones I will be on for the rest of my life that total $300. I have used broken braces to try to hold my joints in place. I have also had to cut down on food. Due to emotional stress I ended up loosing 30 pounds, I weighed a hundred pounds.

The day the article came out I was contacted by a local talk radio station. I shared with them my experience. If you would like to listen to the Podcast I am at 33:45 so you will have to skip ahead a fair bit to listen to my 15 minute interview.

Here is the podcast of my interview with Pamela McCall. I did the best I could through my brain fog. Thank you so much to cfax for contacting me. Grateful, appreciative and hopeful always. I will never give up! I will continue to fight to the best of abilities.

http://soundcloud.com/pamela-mccall-cfax/july-29-1pm

I am grateful to both the Times Colonist and CFAX1070. Thank you so much for helping me voice my story.

Hopeful for change in the system always.

I remain hopeful always.

Ehlers Danlos Syndrome Looks Like…

When I tell people I have Ehlers Danlos there is always much  confusion. EDS affects my connective tissue it makes me “flexible” which seems to be all the rage as of late.

Flexible for me means chronic dislocations and extreme joint pain. It isn’t a gift nor is it something that I like. I find myself sitting in odd positions that others comment on. “That sure looks uncomfortable.”

The way I carry myself and sit are uncomfortable but when I sit a specific way sometimes it helps ease my pain.

EDS has many complications. One of which I have experienced recently, the bleed in my brain. You can read about this here: https://annawerrunblog.wordpress.com/2016/07/25/the-brain-bleed/

Ehlers Danlos has no cure. It is not something I enjoy having because it hurts me. I dislocate at the most inconvenient times, like being on the toilet and having my pelvis decide it wants to be outside of my body instead of in. Thus causing me to be stuck on the porcelain throne. I call to my husband, “come thither.” I wish that is what came out of my mouth but it is more of a shriek that comes out.

My husband helps me get off the toilet and situates me somewhere else. This hurts everytime. Dislocating isn’t ideal as the more I do it the more pain I am in. Like I have said before the pain is like being deboned alive.

I recall another time when I dislocated my ankle. Everytime I stood it up it rolled out from under me and I crumpled to the floor.

My husband was at work, I ended up stuck on the couch for four hours. When my husband arrived I asked him for water and my crutches that were in the room. Days like this remind me that I need more help than I care to admit.

Ehlers Danlos is a life of pain. It is incurable, it will never give up fighting against my diseases. I will forever keep on pushing forward in hopes of better tomorrow’s.

I remain hopeful always.

Anna

 

The Brain Bleed

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imageThe beginning of April 2016 was a beautiful month. My sister had just given birth to her second daughter. I got to hold her and have some baby snuggles. Even though I ended up dislocating my shoulder holding that five pound baby. It was worth it.

Mid April rolled around and my sister was able to go home from the hospital. I felt like I could finally catch up on some rest after the baby excitement.

Around 3:00am I awoke to a pinching pulling sensation in my face. The whole left side of my face began to droop and sag downwards. Fear poured over me as I told myself I was fine. Pain shot from chest into my arm that traveled down and felt as though it shot out of my hand. My face and arm went numb and I lost conciousness.

Upon waking the next morning around 9:00am my left arm was numb and I had severe chest pain. I asked my mom to take me to the hospital. I walked in and collapsed as soon as I entered the building.

My stay included a severe allergic reaction to CT contrast dye followed by loss of consciousness and vommiting. Due to the over active Mast Cells in my body I have a severe allergic reactions. All I knew was that I was in ER and woke up in an ICU Cardiac ward. I left the hospital more confused about my stay and what happened.

I would take two months to come to the conclusion I have a bleed in my brain and this is what caused my symptoms. This was diagnosed by a neurologist I saw. One that I saw in the same hospital I was admitted to through an out paitent program.

I returned to BC and received a letter from AB stating I had a MRI on the 18th of June at noon. However the letter was post marked for the 20th of June and I 24th of June. I called the doctors office back in Alberta, I received a call back stating that they would look into the issue and rebook my MRI. I explained I was in BC and asked if there was a way to have it done here.

A few days into some major head pains I decided it best to return to my old family doctor and ask him his opinion on the matter. He seemed rather shocked by what I had to say and asked me where the bleed was located. I honestly have know idea where to bleed is located. All I know is that I was told it wasn’t a big deal and the doctor that said this booked me an MRI for a few days later. Which I had no idea about.

Seeing my doctor and explaining the happenings in Alberta he said, “no one is to young for a stroke.” He also told me, “There are two kind of bleeds, one is localized. The other can cause an aneurysm. You may need to see a neurologist here. Please remember should you have more neurological issues you should go the ER immediately. If you experience an aneurysm it will feel as though you have been hit in the head with a baseball bat.”

The talk with the Doctor scared me. Deep down I always knew this was a possiblity. I seem to be flaring a lot at the moment and am really watching my stress levels.

The neurologist is AB wants me to have a follow up MRI in Septemeber.

Needless to say it has been a journey one that I am thankful for all the good and yes even the bad. For without the bad times I would not appreciate the good times.

I remain hopeful always.

Bucket List; Low Histamine Cook 3

imageLow Histamine Black Chi Bean Chicken Soup

1/2 cup black beans dried

1/2 cup chickpeas dried

Rinse your beans in cold water, pick out all the shrivelled beans. Soak your beans in 4 cups of cold salted water for 1 hour.

After your beans have soaked drain the soaked water, adding new fresh water to your beans for cooking. Put beans and 4 cups of fresh water into a medium pot. Bring beans to a boil, shut the stove top off and leave them in the hot water for an hour.

Next comes the soup base.

4 cups of water

1 large zucchini (or two smaller ones) cut into rings

2 sticks from a celery stock chopped

1/3 red onion

garlic (optional 4 cloves)

2 teaspoon dried organic basil

2 teaspoon dried organic oregano

1 bay leaf

pinch of salt

Once the beans have finished drain the water off them and add them to the soup stock.

Mince onion and garlic. Chop zucchini, and celery (depending on the size you like your veggies and spices. Keeping in mind larger pieces of vegetables will take longer to cook) Add all ingredients to a large pot, add water, basil and bay leaf. Bring to a boil, turn down and let simmer until vegetables are tender.

I use local chicken that is steroid and antibiotic free.

2 chicken breast cut into cubes

1 tablespoon oil (I use extra virgin olive oil as it’s the only oil I do not react to)

Cook chicken in a frying pan on medium heat until fully cooked. Depending on your oven this can take 15-30 minutes on the stove top. Keep the vegetables simmering until the meat is done.

Once the chicken is fully cooked strain off the fat and add the meat into the soup.

I do not salt my meat or my soup until tasted. I am on a high salt diet so the amount of salt I use is rather high I leave room for others to enjoy my cookin by not salting the meals I make. I only use salt from the health food store as I don’t reat to it. Table salt bothers me a lot, as I am sure it does for others.

Once the chicken is cooked add it to the simmering vegetables. Simmer on low for 5-10 minutes.

Serve and enjoy. Put left overs in the freezer as soon as possible to stop the rise of histamine.

Thanks for stopping by!

Bucket List: Low Histamine Cook 2

imageLow Histamine Chunky Beef Soup

6 cups of water

half a head of cauliflower cut into chunks

1 large zucchini (or two smaller ones) cut into rings

3 sticks from a celery stock

1 Butternutsqaush cut into cubes

1/2 red onion

garlic (optional 6 cloves)

1 tablespoon dried organic basil

1 bay leaf

pinch of salt

I generally use the above recipe for all my soup and stew bases. Not being able to eat premade stock is a challenge, but it really helped me think outside of the box!

You will need a large pot.

Mince onion and garlic. Chop the cauliflower, zucchini, and celery (depending on the size you like your veggies. Keeping in mind larger pieces of vegetables will take longer to cook) Add all ingredients to a large pot, add water, basil and bay leaf. Bring to a boil, turn down and let simmer until vegetables are tender.

I use local beef that is steroid and antibiotic free.

2 packages ground beef (My two packages of beef are equivalent to one package of regular ground beef you by in the store)

1 tablespoon raw sugar (sugar helps to tenderize the beef

1 tablespoon oil (I use extra virgin olive oil as it’s the only oil I do not react to)

Cook beef in a frying pan on medium heat until fully cooked. Depending on your oven this can take 15-30 minutes on the stove top. Keep the vegetables stimmering on low during this time.

Once the beef is fully cooked I strain the fat off and add it to the soup.

I do not salt my meat or my soup until tasted. I am on a high salt diet so the amount of salt I use is rather high I leave room for others to enjoy my cookin by not salting the meals I make. I only use salt from the health food store as I don’t reat to it. Table salt bothers me a lot, as I am sure it does for others.

Once the chicken is cooked add it to the simmering vegetables. Simmer on low for 30 minutes.

Take left overs and freeze Right away you can use these as premade dinners.

Serve and enjoy.

Bucket List; Low Histamine Cook

image

Low Histamine Chunky Chicken Soup

4 cups of water

half a head of cauliflower chopped into chunks

1 large zucchini (or two smaller ones) cut into rings

2 sticks from a celery stock chopped

1/4 red onion

garlic (optional 3 cloves)

2 teaspoon dried organic basil

1 bay leaf

pinch of salt

I generally use the above recipe for all my soup and stew bases. Not being able to eat premade stock is a challenge, but it really helped me think outside of the box!

Mince onion and garlic. Chop the cauliflower, zucchini, and celery (depending on the size you like your veggies. Keeping in mind larger pieces of vegetables will take longer to cook) Add all ingredients to a large pot, add water, basil and bay leaf. Bring to a boil, turn down and let simmer until vegetables are tender.

I use local chicken that is steroid and antibiotic free.

2 chicken breast cut into cubes

1 tablespoon oil (I use extra virgin olive oil as it’s the only oil I do not react to)

Cook chicken in a frying pan on medium heat until fully cooked. Depending on your oven this can take 15-30 minutes on the stove top. Keep the vegetables simmering until the meat is done.

Once the chicken is fully cooked I strain off all the fat and then add my meat to the soup.

I do not salt my meat or my soup until tasted. I am on a high salt diet so the amount of salt I use is rather high  I leave room for others to enjoy my cookin by not salting the meals I make. I only use salt from the health food store as I don’t reat to it. Table salt bothers me a lot, as I am sure it does for others.

Once the chicken is cooked add it to the simmering vegetables. Simmer on low for 5-10 minutes.

Serve and enjoy. Put left overs in the freezer as soon as possible to stop the rise of histamine.

Thanks for stopping by!

 

Bucket List; Low Histamine Bake 2

imagePeanut My Butter Cookies

3 eggs

1 1/2 cup raw sugar

1/2 cup maple syrup

1 small jar of Adams peanut butter (500g jar)

3 cups flour (rice flour, or coconut flour can also be used)

1 tablespoon oil

1 teaspoon baking powder (no aluminum)

Mix together the baking powder and flour set them aside. Beat eggs and sugar together. Add maple syrup, jar of peanut butter, oil and then add dry ingredients. If your dough is to tacky add 1 tablespoon of flour to reduce the tackiness.

Use parchment paper to cover your cookie sheets. Ball the dough and place balls on the parchment paper. Flatten balls with a fork or your fingers.

Oven 375 cook for 10-15 minutes

Let cool fully. I freeze all of my cookies once they are baked by putting them in freezer bags.

Thanks for stopping by.

 

 

 

Bucket List; The Low Histamine Bake

Ever since I learned I can not eat the things I love I have been trying to come up with different recipes. I want to enjoy food. Not just eat to survive. I love beets and a lot of my recipes will have beets in them.

I want to share my cooking and baking with the world. I was blessed with a gift. My mother cooks by literally throwing things together. I am blessed and grateful I got her gift of cooking and baking. Thank you mom. Without you I would be so bold in the kitchen.

Please note the recipes I will be sharing are ones that have worked for me. Take what you like and scarp the rest. Living with disease is frustrating enough and then having a extremely limited diet can bite the big one. Diseases will not stop me from enjoying food. Everyone with mast cell diseases reacts to differently to different foods. Some of the foods we react to can be the same other are vastly different.

This is my beet cake/muffin bake recipe. A must for this recipie is truly loving the taste of beets!

Sweet Beety 
2 large raw beets ground up into paste
1/2 cup ground into paste raw zucchini
1/2 cup ground into paste raw mango
1/2 cup mango juice
2 tablespoon olive oil
1/2 cup maple syrup
1 1/2 cup raw sugar
1 teaspoon salt
1 teaspoon baking powder (without aluminum)
3 eggs
3 cups of flour (Depending on which flour you use the cake will taste differently, for gluten free use rice flour, or coconut flour)

Mix dry ingredients together and set aside. Beat eggs with sugar and oil. Add syrup, beats, zucchini and juice. Add dry ingredients.

Preheat oven to 375.

Oil and flour your 9″ x 9″ pan and a 12 tin muffin pan. Cook for 40 minutes. Check to make sure it’s done with a tooth pick. If the tooth pick comes out clean it is done.

Let cool for 10 minutes before removing from the pan.

For extra sweetness drizzle a little maple over the top.

The Loss You Face…

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***The above illustattion was done back in 2015 dealing with the loss of  friend due to being ill is never easy to deal with. This drawing is called, “Pulverized.”

Chronic illness is a punch in the gut. My chronic illness has made me different, I have lost my independence.

Not only can one loose their inpendenance, their ability to work and having a good quality of life. But one can also loose the friendship and relationships with those around them.

Sometimes the loss is of a long time friend, sometimes it’s a spouse and other times it’s a family member that chooses to cut ties.

I have experienced loss of friends but also gain of friends that understand what I am going through.

For years I have struggled to understand why friends, family and spouses choose to leave loved ones lives due to illness.  I believe I have finally figured out why.

Diseases of any sort remind us of our mortality. Death is oddly something many people think will not happen to them.  For some this helps them to live more in the moment. For others it is a reality of dying and getting sick themselves that they are unable to face.

“Memento Mori,” which translates to “remember you must die.” We all face death it is not something we can escape. I honestly believe that some people are scared of sick people for this reason.

It doesn’t matter who we are we can’t escape death.

Please remember that if someone has chosen to stop talking to you and has left your life, that it is not your fault. It truly has to do with them and how they perceive illness.

I to have suffered the loss of friends, I understand the sting of reality. I know it is not my fault. Please know if is not your fault either. This doesn’t make it less painful, it still hurts when long times friends leave our lives. I can only image the sting when it is a family member or spouse.

You are not alone on your journey, please remember that.

Thank you for your time.

I remain hopeful always,

Anna