Just another Christian Mommy

Need some bling? Check out my Origami Owl Jewelry  Here is a quick video update on what's going on with my health. It's been an emotional week and I am happy to report I got some good news and things are moving in the correct direction! Thank you everyone for your support!

 Sometimes it is so easy to become overwhelmed by how much I have lost these last few years, first with Noah's health decline and then with my own. I miss teaching more than I could possibly express! I miss my students and often think about them and wonder how they are doing, not just musically but in life in general. My studio students I used to see daily and now I haven't seen most of them in over a year. I miss being able to take a shower by myself, driving and being well enough to do errands or going out without having to plan meds and what not.  The past month has been hard on me healthwise. I've been just hanging on the really sick but not sick enough to be hospitalized in a pandemic. My primary said if our hospitals were not over run at the moment he would send me as a direct admit for 4 or 5 days to get the tests I need to get me on the road to recovery sooner. all December I called and left messages for my GI and for one full month I did not receive a call back. In...

  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...