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Showing posts from 2020

Finding joy in the midst of chaos

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  So I won't try to sugar coat it, this past week was awful! It started with Miss marvel, Noah's beloved pet hamster which we have only had for a month dying suddenly. This was my child's first experience with loss and it was so hard to see him in so much pain! My amazing Husband was able to help him work through some of the pain by putting it in comic book terms and relating it to Thanos and the Avenger's movies. ( Thank God) Noah also had a rough appointment at the Nephrologist where we found out despite high doses of Vitamin D, his levels are still insanely low and the reason he has such low energy and all over bone pain. He had to get another blood draw and completely melted down and it became an extremely stressful situation. He is suspected to be on the spectrum but the testing keeps getting cancelled or delayed due to covid. He has had 5 different hospitalists from 3 different hospitals think he is on the spectrum but getting it official will help get him more su

2 epis, swelling, and the TUBE IS OUT

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 Lets start with the wins! I was able to maintain a calorie count and body weight for 10 days with feeds turned off so a few days ago I was able to have my NJ tube out!!! This has helped me so much!!! I was having mild swelling on and off the last 3 weeks in my throat as a reaction to the tube itself (thank you MCAS) and had to use my EPI PEN 2 times the day before because the swelling was affecting my ability to breathe. I was so relived when it ended up being just a few hours in the ER for that one! I was given fluids, iv steroids', and iv benedryl and thankfully sent home because they didn't want to mess with my tube without my GI approving and thankfully the next day I was given the okay to remove it. I started losing my vocal range about 2 weeks into having the tube due to swelling and tension so I am so excited to get my voice back into shape and singing as much as possible now. Now as much as it caused issues I was able to be out of the hospital and it saved me from pass

IV meds, they work!!! all the emotions that took over me the last visit!

 I haven't updated recently and I want to catch everyone who may not be on my facebook up!  My last admission was rough on my physically and even more so emotionally which I think made dealing with the physical stuff harder. I was in tears a few times which is never good because then you get the, are you stressed talk from the doctors like that is the cause of everything......  Thing is I was on the medications or have been on the combo of meds that should have made me better... I was supposed to be better yet my blood cortisol was still virtually undetectable! my GI thought it was an absorption issue but he couldn't convince the endocrinologists at memorial to keep me on iv steroids because most people don't need that. Well guess what if you google iv Hydrocortif and Adrenal insufficiency  you can find so many that need this treatment to feel normal and you can find so many on the pill form that cant not function. The Endos at memorial were okay with leaving me a 34 year o

Day 5 of crisis

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  So I definitely don't look better or feel better. I felt better at first as they gave me high doses of IV steriods an fluids then I started swelling yesterday and now it hurts to hold my phone up move. Emotionally I am all over the place from the pain, the way I look, the loneliness, and of course the steriods. I was in tears several times yesterday mostly from the pain.  I was in much worse shape than I thought I was. The doctors said I will be here until begining of next week at least. The crisis happened because my body wasn't absorbing my oral steriods. Thankfully there are many types of steriods so we can try another one. Right now we have to get my body's levels out of the danger zone. When your body doesn't have enough cortisol you can die. When your body is too low it can't handle physical stress, or sickness. Your cortisol helps to regulate all sorts of important bodily functions including blood pressure, your gi tract, blood sugar,reproduction and more.

Full on Adrenal Crisis

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I have been having trouble with dehydration ever since thy removed my PICC line. This past week i was in and out of the er and my primary decided I needed a PICC for hydration. On Friday the paper work didnt get done in time so that left me on my own over the weekend. I live in Southern California and the heat ( don’t have air, cant afford a window unit) made things so much worse. I was in the er friday for D50, fluids and pain meds. D50 is IV dextrose aka SUGAR. Mine tends to drop quickly when I’m having trouble. I was hoping i could make it to Monday so i could just get my PICC and avoid the er. Why do I want to avoid the er? It’s full of sick people and people with COVID 19... I have to take daily steroids which leaves me immune compromised. I felt bad Saturday and napped and laid on the couch. Sunday morning I still felt crummy but decide to do my hair and makeup for church zoom to see if that made me feel better. I really think being positive is the only way I am making it through

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

A thing we don’t talk about

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So I am going to discuss something that is not talked about often but when I decided to poll friends I found out so many women go through this and we generally suffer alone. I’m writing this to share my story and let others know they are NOT alone. Warning it’s rather long and I do get graphic. I have been pregnant for 5 of the last 8 months, for 5 months I was excited and looking forward to having a new baby. I hoped for a girl but was really just hoping for a healthy baby that would be a perfect mix of my husband and I. My husband is my absolute best friend and we have been married for 2.5 year though we have known each other for 22 years. Wow saying I have known some that long makes me start to feel a tad too old! I have two boys for a previous relationship and he has been like a dad to them since we started dating 8 years ago. I have known since we started dating I wanted to marry him and we wanted to grow our family. We took thing slow and waiting for things to be right. Yet it se

My DIY Fabric Mask

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Cut out the pattern of your size. XL LARGE PATTERN SMALL/ MEDIUM  Lining SMALL MEDIUM MAIN Fold the main fabric into halve with the wrong side facing each other, pin the paper pattern onto the double-layered fabric. Cut it out Repeat with liner Remove pins and paper pattern, get set to sew. Turn the face mask main piece with wrong size facing out, sew the curve part  of the face mask. You can iron the seams to make it lay more flat if you desire, i didn’t but it is the proper way. Repeat the sewing on the lining part. Place The liner and patterned part together wrong side facing out.   The main fabric of the side ear area is longer than the lining piece. We will sew the elastic to this. Sew the two pieces together along the top and bottom. Turn right side out I left the liner open at the ends so I can remove and place filters. Some filters like coffee filters need to be thrown away and not washed where interfacing can be washed and reused.

Jesus Loves Me Art Project

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Hello Everyone! Today I will show you how to make a fun Art Project to go with your favorite song, Bible verse, or more! My first example is for the song Jesus Loves Me (click here to see a video to sing along with me) Supplies: Paints, Markers, or Crayons I used acrylic paints, and sharpie markers Paper , or a Canvas i f painting you will want a thicker paper like for mixed media or paint.  Scissors Tape - I used 2 way tape but regular tape works as well Template printed or drawn out of a separate piece of paper Optional Heat Gun or blow dryer to make the paint dry quicker  These instructions will be for the song Jesus Loves me but feel free to swap anything out! Step 1 Print out or draw your template and cut it out To start just cut out around the largest heart. Step 2 Tape to your paper or canvas, I left room at the top to Write Jesus Loves Me at the end. Step 3 Paint the background any color. Painting away from the template works easier, but have fun