Thursday, May 28, 2015

Just another day in my "Neighborhood"

Well, dose two of Methotrexate is in the books. Surprisingly I woke up bright and early this morning full of energy and feeling like a million dollars. Sadly though as time passed the nausea and overall yuckiness sat in, and I have taken up refugee on my couch watching Lifetime movies and listening to the never ending rain.

The good news is that after a week of trying I finally reached Dr. Lilly's nurse and got her to agree to talk to Dr. Lilly regarding some medicine to hopefully help with the nausea and extreme fatigue I have been feeling (along with other things).

This rain, and the fact that most of the week has been extremely quiet due to it really only being me and the tiniest spawn in the house, I have had what I consider to be a bit too much time to think. For some people thinking is good, it allows them to process things, but for me thinking causes me to dwell, worry, and overthink. I am still so happy to finally have answers to the health issues which have imprisoned me for so very long, and truthfully I think I suspected that the answers would be something similar. I guess what I hadn't bargained for or suspected is the actual dynamic or severity. I had never expected at 32 to hear a doctor tell me that several of my major organs were already being damaged by a disease I did not even know I had. I knew there were issues, but I must admit that even I was beginning to wonder if they were all in my head (maybe I just hoped they were).

Somehow in some ways hearing that I have Lupus was harder to hear than being diagnosed with cancer. I guess it could perhaps be partially because when my cancer diagnosis came around the loss of my son was still new and I was still numb, or perhaps it was simply knowing and feeling that I would be ok, and eventually put cancer behind me. Lupus is sadly not something I can put behind me ever, quiet the contrary actually. Lupus is something I will deal with every day for the rest of my life, constantly worrying about the damage it is doing to my body, or worse what the damages the medicines that I now need are doing to my body.

As crazy or perhaps morbid as it may seem to some my diagnosis has made me realize my own weakness and mortality more than anything else in my life ever has. In the last couple of weeks I have realized more than I ever thought possible all the things I haven't done or experienced. I realized that none of my bucket list items have been done or even really thought about, but most importantly I realized that relationships and people I have taken for granted really deserve more of me than I have been giving. I guess it would be pretty reasonable to say my mind has been a whirlwind lately.

Still I am evolving and adapting as much as possible. I am learning to cope with the new "neighborhood" I have moved into, and hope that one day I can learn to like the view here. I am not allowing myself to get discouraged (well at least not for very long) even though I am already sick of being sick. I am desperately missing my old life and the old me, but I am keeping my head up. I prefer to accept this challenge life has handed me, and face it head on rather than run and hide. In my position it would be so easy to become an isolated victim but really that is not me. I continuously remind myself that I will never be handed anything I can not handle, and I must keep swimming even if most of the time I feel as though I am swimming up stream.

Life may have changed but no matter what I am still me, and that is something that Lupus can never take away!


  1. I decided after connecting with you on Twitter to come check out your blog. For being dealt such a bad hand of cards I can still feel your strength in this post. Methotrexate is a harsh drug. I used to work for an arthritis specialist who administered it to a lot of patients. Is it for the cancer or for your Lupus? I hope they can find something to help you with the nausea and fatigue. Sending hugs.

    1. Thank you for stopping by and reading a bit. I hope that you will continue to read as I write about so many different things. The methotrexate I take is for my Lupus. it is a drug I will likely take for the rest of my life as I have too much CNS involvement to be approved for any of the other drugs Lupus patients receive. Thank you for the hugs they are appreciated.