I have been away for a long time, but life is insane right now. I hope that this post finds all of you doing well! I miss you guys and all of your support and advise but after the crazy travel schedule I have been on lately I just don't have it in me to get online when I get to a hotel each night.
Things are good with me. Aven came home a month ago after 87 days in the NICU. He is healthy and happy baby. He is now up to 8 pounds and meeting his milestones. For a 4 month old baby he is now the size of a newborn. He did come home with his PDA not closed and on oxygen but he is now off of the oxygen and we hope when he sees the cardiologist in May his PDA has closed. The twins love him and they are fabulous, they turned 2 last month. They are perfect in every way, you would never know they were such premies as well except they are still a little short! But otherwise perfect babies that keep their Mimi very busy when she keeps them.
I'm not sure if perhaps the Remicade is not working as well as I had hoped or perhaps the crazy life I have right now is contributing. Maybe it's a combination of both. I don't see Dr. D until May and I have a few new symptoms that maybe someone has some help for. My hands have always been my major problem but the past few weeks they have a new trick. I wake up every morning with always my right hand but sometimes both are numb. It goes away pretty quickly but when I first get up I can't hold a toothbrush, coffee cup, etc - all those things you hold first thing in the morning. Starting the other day the soles of my feet hurt. Started with the left heel - felt like I had a bruise on it, then spread to the side and front of my foot. Yesterday the right foot started doing the same thing. It is worse in the morning and gets better as the day goes on but by the time I get to the hotel or (YEA) home tonight it is back.
Dr. D said she would phone prednisone in until I can get in for my appointment but I hate to take it. I have my infusion on Tuesday, I'm getting it every 6 weeks. I have totally changed my lifestyle - I eat nothing that is not organic or natural. Our family has bought into a farm so all of our meats, dairy and pork are grain feed and organic. We have chickens that lay eggs and we have chickens that we use for food. We grew all veggies that we canned and froze. Now obviously we have to still purchase some things but we try to only buy organic and local. I know I have an intolerance to gluten and so I have eliminated that from my diet. I do have a few other health issues not related to PsA that I'm dealing with as well so do you think they may be contributing to my problems. My doctor and ob/gyn who are handling this don't think so.
Any thoughts and suggestions would be great! I don't mean to sound negative, for the most part things are going so well, it is just so frustrating to have these setbacks.
I think about you guys a lot and wish I would be better about keeping in touch. Wednesday I told my class that it was great to be in Texas and I was actually in Idaho - so can I just say life is nuts but I wouldn't have it any other way!
phew! Your post makes me feel tired just reading it! Sounds like you really have your hands full, good luck with it all. As has been said already, you seem to have all those lifestyle changes in hand…you will benefit from it all…sending you a big hug, we miss you, but lovely to get an update x