Martha...my life long enemy...fighting the erg of complete meltdown and grief that she brings...I will survive, I will kill her one day and it will bring me all the joy she stole from me!

Hello my new people, we are doing this adventure together  of venting to the web.  My family and friends have heard my woes all to much and I hate complaining  ALL. THE. TIME to them.  Sooooo lucky you web friends!  As I am sitting here feeling very sorry for myself  (for what you ask) I am a 43 (I think, maybe 42) mom of two teenagers boys that don't get in trouble much and a fantastic husband,.. the problem? I have Dermatomyositus, I just cant get out of bed this weekend,  My mind is saying "get up you fool, you're missing ANOTHER day with your family" as my body is saying "shut up brain, I KNNOOOOOW but (and here goes my everyday complaints) my knees burn, my hands hurt, my head is painful again, my thighs are permanently weak, I am depressed and my fatigue is real and my heart is low....I just cant. I so want to get up, but I just cant.  

Dermatomyositus: an Infammatory incurable disease marked my muscle weakness and skin rash. pain areas in joints or muscles (both in my case)  fatigue, difficulty swallowing, rash on face and chest area... blah blah blah 

So I'm learning this photo process, but when I go outside not protected, I get little blisters,,,this was a blister that I put a band-aide over so not to leak on my bed. In the morning I pulled the band-aide off and walaa, the band-aide took my skin off as well. Lesson learned. No band-aides.

 I'm feeling pissy today... like if you come in my room with flowers, I will breathe fire upon them and make them wither..(mainly due to the fact I haven't brushed my teeth, but we will say its bc of my mood)..and then yell at you to leave my room as my heart says please stay and keep me company. But who would want to stay with a hateful gru that is mouning her loss of independence? Heck, not me! (specially with fire breath) 


I got this stupid diagnosis about a year and a half ago,..turned my life upside down,,I had this ridiculous red blemish on my face so after awhile I went to the dermatologist.  She diagnosed me with rosacea and was about to leave when she accidentally bump my arm and I winced in pain.  Long story for another day short, I got diagnosed with Dermatomyositus with a side of possible cancer, they found 5 tumors,,,,After 6 months of every test and meetings with oncologist,.. many tears in the shower begging God for it not to be cancer, God answered and said OK. Its not going to be cancer but the tumors will be Aspergilios,,, yup, not cancer but the same fate as cancer. sigh, I need to be more direct in when begging with God.  I don't want any disease that will kill me before 75.  We are still in negotiations with that.  I have 5 tumors in my lungs and liver, I take this horrible medicine and I am down now to one tumor but it has not changed size. at all. like it's there just to remind me that Girl. you are NOT in control, you better keep giving it to God because he holds your future.....oh crap. fine. you got this Lord?  Its  ALLL  yours, because I also have this Dermatomyositus , ( we should name it, there is no cure for it so I may as well...Martha? Yes, from now on its name will be Martha)   So Martha is a very rare autoimmune,she and I don't always get along,  most days we tolerate each other, then there are days like today... Martha doesn't allow me in the sun...at all... and once I figure out how to upload pictures I will show you what she does to my skin. Its not pretty,and for a sun person, this is one of my depressions....two years now not being able to go on family vacations to the beach, heck, not even being able to go outside of my house!! Me and Martha, what we can learn from living with something we don't like, actually hate, sometimes Martha steals my joy.  You know, I like naming this disease...this writing has already helped my mood for today, 

 Dermatomyositus, aka Martha has won, joy stealer, just today.

There is so much more that I need to write and share, like how I have gained 30 lbs and the depression that comes just from that..losing my hair..the days I worry that the tumor will turn into cancer...the day I received my handicap card for my car..the days I fall in public.., but for now I just need to make sure I can fix all the grammatical errors, run on sentences, thinking about if I should delete that curse word,(I did) and do this all without deleting this whole blasted thing!  I may write daily, weekly, monthly and by the looks of my blogs before, 6 years...I don't know, I just knew today I needed to vent. My family deserves a happier mother/wife. Today Martha got me but tomorrow we will learn to get along because she will be with me for the long haul and I need to be stronger then her.