Shaving My Head For Ehlers-Danlos Syndrome Awareness

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In hopes of raising awareness for Ehlers Danlos Syndrome, I will be shaving my head and raising money for EDS. I will be taking pledges and will be donating all the money to The ILC Foundation in Toronto. The ILC Foundation is a Canadian EDS Foundation, they also help people living with chronic pain, and have a research division. Learn about The ILC Foundation here. http://www.theilcfoundation.org.

IMG_5991Ehlers Danlos Syndrome is an inherited connective tissue disorder, it is incurable and something that I live with. EDS means I am lacking the glue in my connective tissue to hold me together. I dislocate my joints regularly, generally daily and nightly. I wear protective braces to help aid in my mobility. EDS isn’t just about joints, it affects my ability to eat, sleep, and function on my own.

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I am disabled because of Ehlers Danlos Syndrome. This condition affects many people and causes it’s suffers to feel isolated, trapped, confused and sometimes suicidal due to not being understood. My hope is to help bring about change in any small way I can. Connecting fellow suffers to the resources we need is vital for our care.

Learn more about EDS it’s types and prognosis here http://www.theilcfoundation.org/2017-eds-international-classification/

I will donate all funds to help aid in research and awareness. I’ll be taking pledges now until August 31st. You can mail your donation to me via cheque make it out to “The ILC Foundation.” Please mail cheque to

Po Box 36083 Esquimalt
Victoria BC
V9A 7J5
Canada

I will mail all cheques to them in one envelope the day of my head shave!

You can donate your pledged amount right to The ILC Foundation here. http://www.theilcfoundation.org/donate/ please let me know how much you are pledging so I can share with everyone how much we raise by the 31st of August.

I will video tape my head shave and put it online. Let’s help raise awareness for Ehlers Danlos Syndrome, let’s make a difference for the younger generation affected by Ehlers Danlos, those undiagnosed and those living with the rarer forms of EDS including the deadly vascular EDS.

Thank you so much for your time. Collectively we can bring about change, together we can make this invisible disorder visible. I remain hopeful now and always.

Farrar Norwoods Story Living With Vascular EDS

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Farrar lives with Vascular EDS, please be respectful of her and her journey as she shares her story in essay format. Learn about Vascular EDS here https://www.ehlers-danlos.com/eds-types/#vEDS

Hello my name is Farrar Norwood, I’m 28 years old & I have Ehlers Danlos syndrome type IV (vascular type). My life changed dramatically when I was hospitalized in 2016 with severe pain in my abdomen. For my family and myself this was not our first rodeo, so knowing what we knew from previous encounters we rushed to the E.R.

I was diagnosed with vascular eds after the beach trip in 2016. It was a typical day there, playing in the ocean with my husband jumping up and down with the waves getting knocked down. I didn’t think nothing of it we continued our day, we had lunch and hit the road back home. Within 30 minutes of arriving to the house I started getting sick feeling nauseous having stomach pain everything!!! Long story short I was taken to the ER where they began to run tests. They asked me even asked if I was in a car wreck because my pancreas and another organ were damaged pretty bad causing the pain. It was that day a team of doctors came in and gave me the news that I had vascular EDS.

When I was 10 years old I got really sick, & as any mother would my mother took me to my paediatrician. He would exam me only to find I was in a lot more pain than I led on. So after a short visit my mother was told to take me straight to the hospital. I was 10 years old but very observant, so I knew something was wrong but didn’t know the extent.

Needless to say, 3 months later I was leaving the hospital with a colostomy bag and a diagnosis of diverticulitis. I was sent home with a nurse so I could get the proper treatment for healing also to teach my mother and oldest sister how to care for me. I was devastated. I was a kid who had never even heard of such thing. To be exact the Drs said I was the youngest child in history to have ever had to go through so much.

All through out middle school I was learning to live the lifestyle I would always live. I was using the nurses restroom instead of the other one, for my own privacy which was really nice of them now that I think of it.

But being treated different was weird to me and I didn’t like it. People didn’t understand and never really asked either. Flashing forward a few years later I had gotten things under control so I thought. Now at this point I was 21 and I am back in the hospital with the same excruciating pain. After a few months and a lot of pressure on the family I was able to go home once again.

Being properly diagnosed I was back in the hospital once again at the age of 26 with the reoccurring pain. .. It was right after a beach trip on the way home when I started feeling really bad. .. So knowing what I know I stay home hoping it would go away knowing I couldn’t rush every time something alarmed me.

After awhile I knew things were getting worse so my husband took me to the er. That day on April 26 after a lot of testing, crying, poking and vomiting, I was properly diagnosed with ehlers danlos syndrome. I was upset to say the least. .. Now dealing with something I never heard of i also had to face that they were wrong the whole time about me having diverticulitis.

Is my whole life a lie? How can this happen to me? Why me? Why now? Why my family? Confused and in shock my husband and I took the news the best way we could. I’m a firm believer in God so 8 I took it a lot better than he did. He never showed any weakness but I knew He didn’t understand. But thankfully now we know, & this just explained all the un explainable things I was going through. So for me it was a sigh of relief but not a great one.

At least now I was aware of what was going on and why. So I was thankful that God blessed me with drs who knew what was going on. So how was my life different before??? Well before I was young wild and free. . now I’m tired, sore and crabby. Lol. But for the most part I have come to terms with my illness and I live everyday as I did before diagnosis. Happy blessed and thankful. Just a little more aware of things that is all.

My typical day goes like this I wake up, I automatically thank the lord for blessing me with another day. I take my dog out to use the restroom, I brush my teeth, Shower, take my meds, and start my day. Everyday is a challenge and everyday I never know how I will feel. Some days are great some days are horrible. But everyday is a BLESSING. So hurting or not I’m thankful.

The hardest part for me in this whole shebang, is not being able to do as much as my mind and soul thinks I can. For instance, I love to bake. Baking and decorating cakes is my passion so being I have huge family I get the opportunity to live out my dream quite a bit. But after doing a cake for hours and hours at a time & on my feet constantly I pay tremendously the next day.

I wake up exhausted as if I never rested and it takes about 3 days to really feel like myself again. Which makes me sad and has led to a slight depression. So things are a lot different now but that doesn’t mean I’m useless, I’m just not as untouchable as I thought I was.

God has brung me this far, I don’t see him leaving me now!!! So no, I can not keep up with others, & I don’t try either because it would kill me and I’m here to live not to be like anyone other than myself!!!

So if there is one thing I would like to tell others it would be to embrace what God gave you and live life the best way you know how, because regardless of what we are made of. We are all FIGHTERS and here to make one hell of mark on this disease. We can show the world that just because our body is weak doesn’t mean our mind and passion to live is!! We are all beautiful individually designed zebras ready to take on the fight!!!!!

“Thank you for sharing your amazing journey with me and the world. It is for sure best to do what is best for you, resting and self care are for sure important. It is a wonderful out look that you have to be thankful for life. Sending you hope always.” -Anna Werrun 

MCAS Masto Life Hacks For Survival

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Masto tips by My lovely friend and me. These tips that have helped us to stay safe. Living with mast cell disease for me is like being allergic to the world. At any given time, from any given thing I can experience anaphylaxis. I find that explaining it to people as, “I’m not technically allergic to everything, but because the diseases my body thinks I am allergic to everything. Thus resulting in anaphylaxis.”

1. Masto/MCAS tip. If you are scent sensitive.
Masks need to be replaced every 4-6 months. If you use an RZ mask the filter needs to be replaced every month. Carry a back up mask, store your mask in ziplock bags to keep the filters fresh. Use one mask for 2 hours then switch your masks. If someone is to spray any scented products around your mask this will compromise your mask.

2. More for scents. Fellow mastos have you ever thought of activated carbon? Like the stuff you use for a fish tank!? Again a big thanks to my friend for pointing out that putting things that have absorbed smell into activated carbon can help take the smell out of it.

3. Air purifiers. Using air purifiers has saved my lungs. Air purifiers can help to reduce the amount of smells we breathe in especially in a apartment. Suggested air purifiers http://www.usairpurifiers.com/air-purifiers-use-chemical-voc.html

4. Reduce stress. Do something you truly love or something that is going to help you. When we are sick many times we forget these things. Even if you start out with something simple this can make a huge difference. Painting, or writing are two things I enjoy. I will also go for a walk (if I am able to).

5. Avoid spicy foods. Spicy foods are Known to increase and make mast cells more angry. This doesn’t just mean not eating them. It means not being in a public place that cooks foods like this, and also avoid things like curry, as it is extremely high in histamine.

6. Be gentle with yourself. When you have brain fog remember this happens to all of us Mastos. You aren’t alone. Many of us get forgetful and confused, try your best to not get angry with yourself, you are doing the best you can in that moment. You are worthy of love and respect from others, but most importantly yourself.

7. Go scent free. Unscented soaps, dish soaps, body products, natural tooth paste/unflavoured no Floride, no dyes , I truly at first did not think that the smells of body products affected me but they truly do, they make me anxious. Throw out the smelly products because they can increase risk of reactions, sometimes this means getting rid of clothes, blankets, furniture, because smells can get caught in materials. I would for sure recommending not to smoke, smoking is terrible for ones health all ready and if you have MCAS this will only increase your risks of bad reactions or anaphylaxis.

8. Try the elimination diet (if this has been recommended by your doctor). Sometimes the yummy foods we are eating can be causing the problem. I have personally cut a large majority of things out of my diet to help me feel a little better. It isn’t a cure, but it does help. I also take cromyln before I eat and this can sometimes make a difference in how you feel after you eat should you have gastrointestinal involvement.

Remember you have great value you and your life matter. When we do our best to educate others about our illnesses, we can help change the worlds perception about rare diseases. You can do this. Remember you are a fighter, you aren’t alone in this, not now not ever.