One more week to go. Another treatment of IVIG. This time it will be for 4 hours each day to help with headaches. So if it still is bad I will ask to go longer.
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
