Reply To: throat collapsing, veins hurt!

June 25, 2012 at 12:15 pm

Just to add to the chorus, I too have a flare in my CIDP when I have my period- have no idea why! You have to be very careful about declining extra treatments due to work as only by controlling this disease will you protect your ability to work ( and do everything else)- I know it is easier said than done but it is the truth- Have you looked into your work disability policy? are you able to protect your job and income and cut back for awhile- CIDP is a legitimate diagnosis for going on temporary or partial disability provided you can swing it- I did this after struggling for about a year and a half – I am fortunate to have a good policy through work and a supportive workplace. I work part time now –
Right now I am struggling with a relapse as I have been trying to space out my infusions to every 2 weeks and this week will likely be needing and extra infusion- I don’t know where I will fit it in as that means 2 days in infusion and 2 days of side effects but I have no choice. I have learned that you have to stay on top of this disease- when you do that you can have a pretty normal life, but when the disease starts to get the upper hand it is a different story. Recognizing this is not giving up – Recruit your family, friends , co- workers, doctors dedicate to getting the upper hand and do what you need to do to rejuggle your life to allow you to get treatments, rest, self care, etc- this is your marathon – It is not easy but manageable. I agree with Lori – don’t settle! shell bones