Just another Christian Mommy

  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...

 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...

 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...

  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. ...

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...

 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 ge...

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 bette...