Just wanted to say hi

May 26, 2007 at 11:41 pm

Hi BB! I’m about 20 minutes away from Emily in the St. Louis area. Just wanted to say hello. I’ve been counting my blessings this month as my IVIG seems to be working in the energy department. The swelling of my hands and feet and my body going numb is still happening, but I actually planted tomato plants today with my daughter! It was amazing and wonderful!

I have a few words of advice for you. Keep a diary. Anything that goes on write it down, even the smallest thing that you wouldn’t think is important may be. I never thought heartburn would be important, but when I mentioned it to my doctor she yelled at me for not mentioning it sooner. Make sure you surround yourself with people who will give you understanding and help. I used to be the mouth of our family but since my short term memory and words get messed up, my hubby has taken over that job. Most of our friends didn’t understand how I could look normal but complain about feeling so bad. I have gotten to the point where I feel like I don’t have to justify myself to people, if you don’t understand then I don’t need you. I know it sounds harsh but that will lead to my last bit of advice which is… don’t stress yourself out. I used to be the mom who led committees at all the schools and was always involved in something. I had to start saying no and if I think something may stress me out, I don’t do it. I know it sounds horrible, but if I start stressing I find myself coughing more, more fatigued and I go downhill immediately. I know that being chronically ill can cause stress so find yourself a good antidepressant and a good anxiety drug for those tense moments. I am not one to take many pills, however, I have my fab four with me all the time. Zofran for nausea, Xanax for anxiety, zoloft my happy pill, and benadryl for the rash that comes with the ivig.

This site has been a Godsend when it comes to people and information. I know I can come here if I have a problem and get some help. Good luck! I’ll keep you in my prayers.