Hey guys and gals, did you know that today is Rare Disease Day? I would like to say hello to all of my friends out there who suffer from various afflictions. I would also like to say that if you are newly diagnosed with any disease, get a notebook now and start documenting your symptoms, test results, and progress. It really does make your life easier that way. You can bring the journal to your appointments with any questions you have. If you are like me, you might even do research on your own and come up with questions about various tests and levels.
For example, when I was researching Hereditary Hemochromatosis, I discovered a type of test that my doctor had never ordered before and I also realized that I was not getting phlebotomies enough. I needed to go every 6 months for the rest of my life since I also had Porphyria Cutanea Tarda. I was “lucky” in a sense as I realized early on that the PCT bumps or blisters appeared when I was in dire need of a phlebotomy. I started paying more attention to the signs my body was trying to show me and relied less on what the doctor said I needed to do. They were using more caution with my treatment and I believed in being aggressive and hitting this thing head on. Kind of a “go big or go home” type of philosophy. I want to be around for as long as I can without pain, and live a “normal” life. My theories started working, but I have also changed numerous things about my lifestyle based on hours of research.
Right now, I know someone who is suffering because their child is also going through some things. My advice to this friend is don’t give up. The answers are out there, but be aggressive. Normally I wouldn’t advise this, but I know that she has tried to get answers from everywhere just like I once did. If you can narrow down your symptoms, time of day, food choices, and duration this has lasted you will find the answers. I know what it feels like to be in pain and sometimes you have to take that leap of faith. Things will get better and there is hope. Find a support group for people who are going through the same thing. You are not alone in this fight.
“Be faithful in small things because it is in them that your strength lies.” ~Mother Teresa
