Long overdue update!!!

Hi all! It has been a long time since I have posted an update. Thankfully this is a good thing! I have gone back to work and then last week started school. I work 5 days a week for the first time ever! Only about 15 hours or so a week, but I am very happy I can physically do this. I am also taking a full load of classes, so that is very exciting as well!

Physically I have been doing very well. My neck doesn't hurt hardly at all anymore, my range of motion has come back significantly, my neck stiffness is nearly gone, and my headaches have improved drastically! Car rides do not cause me the same amount of pain that they used to. Every bump is not excruciating any longer and I don't need to wear my hard collar at all anymore! My swallowing/aspirations issues have COMPLETELY dissipated as well :) My incision looks good and isn't that itchy any more. Here is a photo of my incision at just about 1 month post op. My surgeon said it looks good. There are a couple of white spots on it which are actually stitches that are supposed to dissolve. With EDS (connective tissue disorder) my body rejects the stitches before they have a chance to dissolve like they are supposed to. It doesn't hurt and I expected it to happen because it happened last time as well. We just have to watch and make sure that I do not develop an infection from any of the rejected stitches.

 

I am still very low on energy. They say it takes about an average of 2-2.5 weeks for every hour you were under anesthesia for the toxins to get out of your body. Since I was under for over six hours it could still be quite a while before I start feeling better again. My thyroid levels being low are also probably causing some fatigue.

I have started to learn to access my port! It is very difficult to get the needle in the right spot. I can prep everything and am confident I know the correct procedure, but I am struggling to get the needle in the correct spot. It will take practice, but I am getting there at least! Hopefully I'll get the hang of it shortly, but it is not easy to do because it is on my upper right chest and I am right handed. Also trying to do it in a mirror makes it difficult as well. I had gotten some little alcohol filled caps that I put on the end of my port while I was in the hospital before and you might remember that I was trying to get some for at home because they reduce the risk of infection. Well we called the company that makes them (Curos they are called) and they sent us a "sample". Well this sample is a hospital sized sample and contains 250 caps in it! This is well over a year supply for me so that was exciting! :)

My neurologist also called me in a prescription for a nausea medication. I have been having really bad nausea and haven't found anything to control it besides this medication so I was extremely grateful for that!

I now have my new insurance, but we are still trying to sort stuff out so I have not been able to schedule any appointments that I need to yet :( Hopefully it will all get worked out very soon!

Right now the only appointment I have scheduled is with my autonomic neurologist on February 13. This is just a follow up/check up appointment, so I don't anticipate anything exciting happening. I will update once we get my insurance settled and I am able to schedule the appointments that I need to! I'll try not to let so long go between updates as well :) Sorry for the delay!