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, to worry, and to 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!

Wednesday, May 27, 2015

Methotrexate day

Well today is officially Methotrexate day. Or as I like to refer to it - feel like death tomorrow morning day. This will be my second dose of Methotrexate was is a drug commonly used for not only chemotherapy but also for things like RA, Lupus, and other auto immune diseases. I am on several medications but without a doubt this is the one I like the absolute very least. This medication can not only be dangerous, but has several pretty yucky side effects including all of the ones you would expect from typical chemotherapy... Yup, hair loss.

While I am celebrating finally having answers to all the medical stuff that has been torturing me and forcing me to feel like a prisoner in my own body for years, I never realized that when answers came they would have already gotten this severe. Lung, stomach, kidney and heart muscle involvement. The scariest thought of all is that I could have continued seeing uncaring medical professionals and potentially died before anyone discovered what had been plaguing me.  It is frightening and infuriating.

Now that I have dusted off this little old place on the web, I am hoping to write daily. I know that some days it is likely to be more blabber than anything, but I hope to capture my thoughts and feelings of dealing with chronic illness while also beginning to once again writing in a similar fashion as before. 

This is my new normal... Chronic illness is my life for the rest of my life, and I can either accept it and learn to let it empower me, or I can try to run away and let it control me. I choose to let this empower me. I am a savior and I will not let this beat me down, I have been through worse, I have lived through worse, and I have defeated worse....