Blessed but Stressed- January Update

 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 the begining of January thankfully a nurse called me back and said she thought maybe my gi had not checked his messages because he is mainly in the hospital and she got me into another gi in the same practice. Whew! 

He brought up the feeding tube only not an ng ( thank GOD!) but a G with J extension if we can not get my oral intake higher. I am currently on TPN. Tpn is total nutrition given to me via my picc line. A picc line is like an iv that is inserted through my upper arm area into a vein and end in the area just above my heart called superior vena cava. Tpn can be hard on the liver and pancreas, this summer I developed pancreatitis from being on Tpn. Tpn has lipids as well to give the fats however I had an anaphylactic reaction to the lipids and with research every type of tpn lipids are made from soy or fish which are two items I am allergic to. So even though I am on tpn I am suppose to drink some Kate Farms or a type of oil to make sure I get some fats. At first I was hey I have enough fat trust me what's the big deal if I don't get them? 

Essential fatty acid deficiency happens when you body doesn't get the good fats. Personally my nails start to break, my hair breaks and falls out, I am currently losing a few handfuls of hair every day. your skin gets super dry and flakey, and the lovely brain fog. The GI is right that long term its healthier for my body to use it's gi track and have a complete formula so my body can get all the nutrients it needs. I felt better and had more energy when I was on tube feeds before with the nj. The nj caused my throat and sinuses to swell and I had an idiopathic allergic reaction with the tube in as well. 

Now that you have some details back to the G with J extension. A plain G tube would be painful and not very successful for someone like me with gastroparesis. The J extension would allow the formula to bypass my stomach and go right into my small intestines. Gastroparesis is a condition where your stomach doesn't digest the food and empty like someone with a healthy stomach would. So bypassing the stomach is a must for me until we can hopefully get to the root cause and heal my stomach. The reason I don't already have this type of tube is because one we are in a pandemic and its not urgent since I have Tpn keeping me stable and the doctor is hoping to get some tests to see if a root cause can be found and then fixed so I could just eat like normal. 

Despite all that has been going on I took a step back this week after a call from my mother in law who is visiting family in Guatemala. She let us know her sister was really sick and how they had to go to three different hospitals to try and get help and what little help they did get there. It made me think about how lucky I am that I can get the tpn at home and be able to infuse while helping my kids with homework or watching movies with my family. If I lived in certain countries I wouldn't have access to the kind of treatments I do here. Also I have heard stories in message groups about people with similar conditions in other states that are not taken seriously or treated like they are drug seeking or have an eating disorder and purposely starving themselves! 

That is it for now, thanks for reading and the support!