Wednesday, March 13, 2013

Living a crafting dream........




Today I am living my crafting dream..... However when I met my Husband 7 years ago I would have never imagined this would be our lives today. We were 2 very healthy(for the most part) and active people. We LOVED to be outdoors. Between my love for photography and the outdoors, our dream was to become a couple that would travel the world taking pictures of all the beautiful landscapes, plants and animals. In my mind I really wanted to work for National Geographic or something awesome like that. (HAHA) We can all dream can't we?!?!

Jason and I knew almost immediately that we wanted to get married. And really wasted no time starting our lives together. We got pregnant and married within our first 2 years so it was pretty busy with all the extra planning going on.




 The pregnancy did not go quite as planned though. Morning sickness had set in, however my morning sickness lasted literally from the time I woke up till I went to bed, and even then I would wake up in the middle of the night some nights and get sick. I know that I am not the only one this has happened to but this was the first major signs when we look back at things now. Almost immediately the Dr's put me on zofran to try and minimize the nausea. This so called "Morning sickness lasted all the way to my delivery date. Other than that I also had some nasty GI complications during the pregnancy. I had gained a total of 18lbs during the pregnancy most of that being the last 2 months and was hospitalized a dozen times before my delivery date.  Despite everything I was able to deliver a healthy 5LB 8 OZ little boy.



For about a year and a half I was able to get most of my health back to where I could manage it for the most part. However in the summer of 2010 after a few minor accidents things took a turn for the worse. By Dec of 2010 they diagnosed me with degenerative disk disease and my T6-T11 vertebrates were completely desiccated. At this point I was also being treated for a severe migraine that was so bad I had to wear sunglasses to even look at a TV screen. They even did an occipital nerve blocker through the back of my skull to try and relieve the migraine but not even that worked.  However the migraine and the mixture of medications made it impossible to manage what we thought at the time was major acid reflux. However it wasn't until after I had the endoscopy that they realized that the problems were much worse. I was than diagnosed with Barrett's Esophagus and shortly after CVS( Cyclic Vomiting Syndrome). Because this had all gone untreated for so long along with all the mixtures of other medications I was throwing up anywhere from 15-30 times a day. Within in 6 short months I had lost almost 40lbs. (this being one of the scariest moments of my life) I felt like I literally wasting away.

So after 2 years of trying different meds they were finally able to find a combination that is starting to help at least regulate the CVS. As there is no cure for it they have been known to at least regulate it so that I may only have 3-5 cycles per year instead of every few weeks like they are now. HOWEVER this is much improvement from every 5 days. About a year ago we noticed I would have problems when I would get up to fast or even if I turn my head while I am walking that I would just drop to the ground and black out. Other things like over heating with very little sun exposure and a couple other issues. Once again I went though a line of testing and added a neurologist to my growing team of doctors. Recently they had given me my diagnoses. I have what is called dysautonomia (aka autonomic dysfunction).

 The autonomic nervous system regulates unconscious body functions, including heart rate, blood pressure, temperature regulation, gastrointestinal secretion, and metabolic and endocrine responses to stress such as the "fight or flight" syndrome. As regulating these functions involves various and multiple organ systems, dysfunctions of the autonomic nervous systems encompass various and multiple disorders.

With the Dysautonomia basically fueling the fire for the CVS it makes for a harder battle to get better just on a daily basis. I have seen improvement since starting all the meds. However 9 meds a day to just manage all this can get exhausting sometimes. 

But that brings us to today. I still have not gained any of the weight back. I am 6 lbs away from having to have the feeding tube talk. The Dr's said that they might have to bypass my stomach for awhile to give it a break. I have to be honest that part actually scares me. So I fight every day to try and never let it get to that point. 

Because of all the meds and certain medical issues I can't drive anymore which mean I could not go back to work, however I don't know anyone that would hire me when I can't be a dependable person not knowing from one day to the next if I am even going to be able to move to get out of bed that day. The doctors have told me that I will be disabled the rest of my life and will most likely be 100% wheel chair bound within 20 years or less. 

So after being diagnosed and sitting around for about 6 months playing the woe is me card, we were in a new home and had no family living with us anymore for me to see or talk to on a daily basis. I decided to pick myself up one day and started doing some crafting.  We were going to be having our first Christmas in the house that year and it was also the last year my son would be home as he would be starting school that next fall.  I was searching for kids Christmas crafts when  I started seeing these blogs and I started reading them. I was just amazed and that's when I decided that I too wanted to share my life experiences and the fun projects that I did with my family. That is when I created Smalltown Dreamz. 

This was one thing I always wanted to blog about,  but could never find the words. I love my readers and would never want to alienate them with (Sick Talk). However recently I have found out about a local family and their 4 year old daughter was diagnosed with CVS and the parents were going nuts trying to find answers. Unfortunately for whatever reason they didn't want to hear from anyone that wasn't a medical profession but a friend of the family had reached out to me for questions and advice to maybe pass on.

That is when I realized that I must use the power of the blog to get the word out. It is so important to have support and people you can talk to that might be going through something similar. Most of my disease is something that from the outside looking in (other than the fact that I look like a skeleton and wheel chair bound for things like grocery shopping and our family hikes) Most people would not even know I was sick. Because of this I have lost friends who for whatever reason thought I was faking, or some didn't know how to handle it so they stopped talking to me. When you are in these types of situations you need an outlet or a group. Something you can do or someone you can talk to, anything to keep your mind off  the negative and always try to think about the positive. Today I am living my crafting dream........




Throughout my journey I will share the ups and downs in hopes that I can help others with a similar problem understand that they are not alone and that there are people out there that understand. 

If you or someone you love has an illness that is debilitating and you ever just need someone to listen always know that I am just an email away. 

Without my faith, family and friends to have been here to support me through all this I don't know if I would be as strong as I am today and for that I will always be grateful!

Stephanie

6 comments:

  1. You are AMAZING!!! And such an inspiration!!! We'll keep you & your family in our prayers!

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  2. I love u and am so proud of u Stephanie. I am so happyvu decided to share your journey. You are an amazing woman with an amazing talent towards crafting. Every piece I see u design shows a piece of your heart. U truly put your love into your work.
    Our prayers are always with u. U are an inspiration to all!!!

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  3. <3 you bestie! You inspire me!

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  4. I agree, you are amazing! Thank you for sharing, and your true friends and family will always be there to support you. And God will not forsake you, ever.

    Keep dreaming!

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  6. You are a strong inspiring young woman, Thank you for sharing your story on your blog. You are raising awareness of your condition and giving others who are suffering from similar afflictions hope and inspiration <3

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