*a few thoughts*

I couldn't tell you why, but i hope to someday. I hope to be able to tell you about how all the pain, worry, anger and frustration I have been going through in regards to my health all meant something. Right now it means jack shit. I have been thrown every type of curve ball (and a few made up ones i do believe) and none of them have hit the dunk tank to fully submerge me a wealth of knowledge i call a diagnosis. I have had a hard time grasping hope...what hope means, what it means to me, what it means to you. The Britannica says hope means to cherish a desire with anticipation and 2: to desire with expectation of obtainment. From this definition my hope is very slim to none right now. I feel as though if a doctor were going to find what was wrong they would have by now. I feel as though they wouldn't have discharged me one by one because there was nothing more "to test for". They have all pushed me aside because i am not a textbook case. They cannot pinpoint what the cause or problem is and they don't want to "waste" their time trying. The best leads have come from my family or myself. The one test we have not gotten yet is the Lyme disease testing. But I was beyond sure the last diagnosis fit so perfectly that now that glimmer of hope has gotten even smaller.

I am trying to keep as much of a positive attitude as possible but how can i do the impossible? I am studying Taoism as a way to help give me hope or something tangible to hang onto in times of strife and trial. I find it very comforting and as though it was written just for me. I'm positive everyone who is a Taoist or studies this thinks the same. I am about 1/2 way through the book "The Te of Piglet" and its remarkable how calm I feel even holding this book. Ive struggled to find my way in life in terms of organized religion, spirituality and i have come to terms that you do NOT need organized religion, nor a god, to be a spiritual person. Yes living in Utah I am sure a lot of people will disagree with me and gasp and have to pick their jaws up off the floor. "Did she just say she doesn't need a god to be spiritual?!" Yes i did. And meant it. I don't know nor do i want to get into it all but i don't feel that people need to put a label on everything and make it fit into a tight little perfect package with the beautiful bow to make something work. This is what my illness has taught me. There is no perfect little box or sparkling bows. My box has 5 sides and is 1" x 5' x 32" x 54" x 2'. Now try to wrap that and place your perfect bow on it. BUT if my illness was 2" x 2" then I would have a diagnosis by now and shiny paper and a bow that rivaled the perfect Christmas morning. This is honestly the best analogy i can give.

I saw my doctor (my family physician who out of everyone has stuck by my side) the other day and she related what I am going through to a miscarriage, which unfortunately i can also relate to. She said that if you lose a baby at 10 wks gestation then every day up until PAST those 10 wks and probably even until the baby is born and in your arms content and swaddled you will worry about losing it. There were 10 weeks between my 2 "episodes" or "events" as they have been called. There is no rhyme or reason to this timing. No link between the 2 but it was 10 weeks since my last "episode" on June 16th. It will be 13 weeks on July 7th. I live in fear going to bed nightly that i will wake up unable to care for Delilah or myself. That if i make long term plans that's the kiss of death (as the only thing in common between the 2 "episodes" were I was planning on going on vacation 17 days after i was admitted to the hospital, each time.) I worry about going through all the recovery again, especially as I haven't fully recovered this time. I feel i would have been fine at this point but last hospitalization they did a muscle biopsy and my muscles are not regenerating as quickly as we had hoped.

I want to be in charge of my life. I want to know whats causing my random issues. I want to know what i can do to prevent a repeat of this year. I want to know I will be here for Delilahs 3rd birthday.