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Showing posts from September, 2020

DIY Feeding Tube Cart

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 So as you know I recently had an NJ tube placed and there are supplies and what not that I need to use everyday. Not to mention all the formula the pharmacy delivered at once! I got this cute little cart at target along with these baskets in the organization area. I love that the cart has wheels because i can just roll it where I need it. I also can use it for something  else down the line if I find my self not needing the tube any more. I bought 2 more baskets but I could fit more of my formula on the bottom this way. I requested Kate Farms because I have so many allergies and all formulas but 2 had something I am allergic to. The hospital I was at didn't have Kate Farms and trialed me on another formula that was vegan and organic, however the copay was going to be $325 per week and the pharmacy was having trouble getting it. The nutritionist came back and said what was that formula you mentioned on the first day? I knew about Kate Farms because my son used the formula to get off

Beauty Begins

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Here I am going to the pharmacy today to pick up my glucose meter. Before I had to use the wheelchair because I would get too dizzy. I did get a little dizzy but was able to rest and bit and keep going. An added bonus was my doctor put In a script to cover a whole new glucose meter, strips, and Lancets so I don't have to pay out of pocket anymore. I have to test at least 2 times per day to make sure my sugar is not going too low.  Somehow in the past week I went from tears over the way I looked to embracing it! Lots of support and prayer got me there! Jewelry can be found at  Here   Through the grace of God, and my friends and family I was able shift my thinking of what was normal and what beauty looks like. I have had low self esteem on and off my entire life and with this summer being so hard it was almost too much to handle. I surrounded my self with positive affirmations. I even became an Origami Owl designer because the positive jewelry really helped me to feel better about my

My diagnosis so far in more details

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 I’ve mentioned Addison’s before but I want to go into more details on what exactly this is. My body stopped making enough of stress hormone called cortisol. Those that know know the last two years I have have to fight for my youngest in what was a never ending battle to get him medically stable. Earlier this year he had a central line and was in and out of the PICU. I find it kind of funny for all things to not work in my body is that fact it’s not making the stress hormone. I joke with my doctors that I used my life supply already!  So cortisol is something my body produces in response to physical and emotion stress on your body. Without it you can go into acres all crisis and slip into a coma and die. It’s not to be taken lightly. Things I have experienced this summer they have linked to my low cortisol levels are, nausea, rapid weight loss ( sounds great but actually miserable) hypoglycemia, hypotension, tachycardia, vommiting, abdominal pain, chest pressure, weak limbs, fainting,

Smiling until it becomes real

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 I hope most of my readers never half to fight like I have to get a diagnosis. When you don’t have something straight forward the things medical professionals say can be so discouraging and defeating. Before starting I want to define some medical terms I will be using. TPN= is total nutrition through a central line that goes right above your heart. This method of feeding does not use the gi tract and can have lots of bad side effects. PICC= a line that enters in your arm and ends right above your heart. It lasts long than an IV and can be used to infuse in and out of the hospital. Addison’s Disease= a very rare disease where your Andrea always glands are damaged and stop making the stress hormone called cortisol. You can die without cortisol and if you are hurt your body needs more cortisol so people with this have to take replacement steroids to allow the body to function properly. Some of the worst phrases I heard were: Your test results are normal, You look good.  Are you sure you a