Tuesday, March 2, 2010

Really? No answers, just more questions...

God I am about as fed up with this as I can be!!!! Why is it that You allow me to struggle through everything in life? Nothing has just come in black and white form. Never. I can't take this anymore. Please just get it over with!!!!!!!!! I don't care what the issue is, just tell them what it is and tell me how to live with it so I can move on with the rest of my life !!!!! Please!!!!!

Ok, so the muscle biopsy showed nothing conclusive... She said I have some abnormal muscle fibers but they didn't know why or what it is... Said it could still be mitochondrial disease, but the extra testing they need to do on the muscle tissue is very expensive and they cannot do it without insurance and that she wants to refer me to the mitochondrial specialists, but once again, it is very expensive and I have no insurance!!! I am going nuts here!! I don't know what to do. I just need a name for the face!!!! It's been a year since I have been asking for help and I am so very tired. Weary. The neurologist told me to go ahead and get the supplements that a person with mito disease would take and see if it helps, although she didn't think it would. I need a Dr. House......

So, WHAT NOW??? Once again all I have is questions and no answers...


  1. Oh Trish.

    Please don't despair. Unfortunately this is the way for many of us with EDS. We have such painful debilitating symptoms and no where to turn. The only to do when faced with closed doors is to open our own as best we can.

    Dealing with what we do know possibly without ever knowing the answers with a cure or name to it all. There needs to be more funding into our condition.

    When I say dealing with I don't mean 'get on with it' I mean adapting as best as we are able. This means fundamental changes on all counts. The way we lead our lives - small bite sized pieces in each day.

    I will think about this more and write when able. I know you don't know what to do or where to turn right now and I understand why.

    But rest assured together we will find a way. It may take time and a lot more patience than you or I have available in our reserves but we will get there.

    In the meantime.. try and rest your weary head and look for small things that please - a childs smile - a hint of sunshine on a rainy day. The big things can wait for they can't be solved today.

    virtual hugs for you today.

  2. (((HUGS))) Trish. Have you tried anything with your diet? It's free :) I felt a lot better once I cut out all processed foods! I was finally soooo fed up with doctors I decided to try it and WOW! I felt better. www.msgmyth.com is where I found my EUREKA moment. Doctors don't understand how much our food affects us. The chemicals in food were really making me sick. I don't know if you are sensitive to chemicals too but you can try her "test diet" on that site and see if you notice a difference. If so you know you're on the right track.

    Also what Achelois said - try to find positive things no matter how small. I really had to try and get out of the "victim" mentality and into a more "proactive" mentality. You have to grieve and process the loss of your old life and the way you think your life "should have been." Accept things are different and be proactive with anything in your power. Like for me the food changes and having a more positive attitude. Those really helped me - I still have a lot of issues but I don't dwell on them and I try to focus on the good things. Easier said than done but when I add all the "baby steps" up, it really makes a difference.

    I've heard said it takes years to get into a chronic illness, so it will take years to get out too. You just have to find those baby steps that work for you and keep adding more. Hope that helps!!!