Scary Stuff

The last week has been extremely hard to get through. I started out the week with a new bump near my port.  I went to the doctor who placed the port and she put me on strong pain medicine and high anxiety medications – I was told to just take it easy and keep an eye on it.  Well it’s been five days, I think, with no changes, except my pain is nothing compared to my kidneys (more in a minute).  The hope was that the bump would grow or shrink so the doctor could better determine what it is.  She considered doing an ultrasound but determined it was to small to really tell what it is…so I wait and hope for it to change or go away. After watching it for a few days she will either drain the cyst? or remove my port or leave it alone if it was nothing of real concern (like a blood clot).  I’ve included a picture of it…this is not the most flattering picture of me, but whatever, look just above the butterfly wings to the little black line…that is the bump in question.  We put a circle around it to see if it grows or moves and this picture only shows part of the circle. You probably are noticing that I also have a bump in my vein in my neck, but that is not any concern it is just part of the port inside my large vein.  I feel like prime vampire meat with that vein so noticeable!  So no changes this far with the bump in question. It is still painful and still concerning.  Hopefully, I will call the doctor tomorrow and find out what my next step with my port is. I’m happy to report it does not appear infected or anything so that is really good! No infections that close to my heart that is too scary!

Then, I also have been feeling like I was getting a UTI (urinary tract infection) so I was put on some antibiotics while my urine culture was processing.  While feeling miserable I missed out on my baby sister’s graduation.  It was so heartbreaking for me to miss her cross the stage and celebrate with her.  We had a ton of people over and I had a really hard time faking like I was enjoying myself. I was miserable.  My pain was not really helped by the pain medicine and all I wanted to do was sleep.  I just kept saying to myself “I’m sick of being sick”, but I choose my treatment for a reason and I trust the protocols I am doing.  It is not easy, but I know it will be worth it.  My step-mom has been really struggling with my current protocol, she’s been encouraging me to switch it up and try a more homeopathic/Chinese medicine route, but I am not ready to give up on my treatment path right now….now matter how scary or hard it is.

I started a new symptom.  I shake, like crazy, like I have Parkinson’s.  It’s awful. I notice it a lot more than people around me but it makes my balance feel off and my legs feel unstable.  It makes my hands tremble and I am not confident to carry anything because I don’t trust myself with all the shaking. I am not sure if it is a medication reaction or a new symptom of my nervous system being attacked by the Lyme bacteria or if it is a die off reaction (this would be good, meaning the bugs in me are dying and my body is processing them and the toxins they release). 

The last two days have been even more challenging as I think my UTI has traveled into my kidneys.  I have pain in my back that is nothing compared to the pain of the bump on my port.  I didn’t even know pain like this ever before! It is new pain that the strong pain medicine doesn’t help.  I’m drinking cranberry juice and other fluids, tracking my temperature (to look for a spike as an indication of an infection, and sleeping a lot. 

I am so glad that last week I called my primary doctor and booked an appointment…just to check in with her because she hasn’t seen me in a while.  That is a God thing, because I certainly need to see her with all this stuff going on!  Also, I have a phone appointment with my specialist on Tuesday. I am very hopeful that both doctors she will help me to feeling better asap.  

Please keep me in your prayers. This week has had a lot of scary stuff going on, but I am learning to take it in stride. I am so happy that Justin is a paramedic and knows so much about the body and medications! I am one lucky Lymie!

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