Wednesday, June 5, 2013

Well, so much for accomplishing the full month of May

As this disease has proven time and time again, plans often fall through.

I can't remember the last post I did for Awareness Month. Maybe I will sprinkle the rest throughout the year. In the mean time, I have gotten sicker. I also started and had to back off of the anti-malarials (I will restart after my upcoming surgery.) I barely remember the last couple of weeks. What I do know for sure is that I called, emailed, and faxed my way through to the pharmaceutical companies to receive meds at lower or no cost to me. I have one more left to do, then my treatment will be pretty much covered for a year and then the focus will finally be on just killing the infections and getting well. I cannot wait for this to happen. I am so sick of fighting to be able to fight. It seems as though the fight for the fight is almost done. I really hope this to be the case. 

In the mean time, I have to keep my brain present enough even though the die-off is causing neuro herxing and it makes me seem crazy. Give me all the pain in the world and I can deal with it, but the neuro problems are almost impossible. I become someone else. In the fight or flight, I fight. When I am neuro herxing, I pick fights. Most of the time I don't even remember them later. It is like remembering a movie from your childhood. You remember key visuals or certain sounds, but there is no fluidity or certainty to the accuracy of the memory. This can happen within minutes or days. 

I will be having at least my gall bladder out soon as it is completely disfunctioning and my appendix will hopefully be going with it. I have learned that die off causes toxins (which I knew, and I do the baths and teas) to the extent of shutting down the organs that deal with ridding the body of them. Essentially my gb is filled with toxins so it can't do anything else. 

And, for this week, to help my friend is holding a Pampered Chef Fundraiser on her website for me. We didn't quite reach the May goals to cover treatment; hopefully this will help. Feel free to visit and shop!

Above all, learn to be a self advocate. Hiding the illness will not help you get better. Find jobs you can do without driving yourself into the ground. If you can no longer work, seek out local resources for counseling and case management. No one is going to do the work for you. It is your life you have to save. I have learned that sharing my story and my feelings about my situation ended some relationships, but the people who stepped up to help are true friends even if we don't get to "hang out", I know they love me through and beyond my disease, and after I win this war, I will be able to come through for them when they need me. Frankly I would rather have the friends who face me and my disease without judgement. 

No comments:

Post a Comment