Karen

Thanks for posting this, Nina. NDRF was my lifeline for many years and I'm sorry to hear about what they are going through right now. I will pray for them and send them a card tomorrow. Hope you are feeling a bit better. karen

Hi Karyn and Poohbear..do you know of http://www.nola.com/, which is The Times-Piscayune newspaper down in N.O.? You can see, by putting in someone's name, or posting something yourselves, if people you are searching for have been accounted for. Everyone is in my prayers. It's horrible. God bless you. Karen

Jan, reinvigorated prayers for you and Jeff that the next three rounds will kill the last of the cancer to never return. In His name all is possible, right? There are so many here thinking and praying and sending you and Jeff their powerful, positive thoughts for complete healing. With all that energy going his way I think that cancer doesn't stand a chance. Hugs, karen PS Jan, I know that your worry about being able to take care of Jeff's needs weighs heavily on you, but gather faith in yourself by how capably you are handling things now. The tables being turned is scary, but just take it a day at a time. You are doing an awesome job.

Emily, you are very generous to support everyone in this way. Thank you! Karen

Jan, I echo everyone's joy at your recent news and continue to pray hard for a full recovery. Doing normal things is good for both of you; who can lighten our spirits better than our own little ones? Enjoy and continue to trust in Him. Karen

Dayna, Your plan sounds like a great one. No brain fog in evidence in working this out! And as you said, you can adjust the plan as needed. It's wonderful that your husband is willing to do what has to be done. He sounds like a super dad and husband! Take care, Karen

Nina, I don't see any sincerity in his apology email to you. If at all possible, I would avoid having him on your dissertation commitee if you can do without him. Sounds like the email was strictly to smooth things over a bit, superficially, without much caring about how you are feeling. He could have added that he hoped you would soon feel much better...I am not trying to raise your low BP with my analysis! I think you know very well how to handle this guy. Good luck, you will be fine, there is no doubt in my mind about that, but it's still a nuisance to have to deal with him and the whole situation. I think you are doing way too much, if this is a voluntary position. Take care of yourself! Karen

Dayna, When I first got sick, my youngest daughter was in her first year of preschool. (she is now 17)Suddenly I couldn't carpool, and the guilt, and all the other emotions that go with it were something that I had to deal with, not just regarding the complications this created surrounding my youngest daughter, but also my kindergartener. What happened though was that my daughters were able to be away from me for periods of the day, which is essential when you have a mother who is feeling badly much of the time. They need to be exposed to an enviroment with normal activity and stimulation, other kids, and people with energy that will do things with them. I tried so hard to counter their worrying about mom, and did my best to make sure they were not isolated because of me. That did mean resigning from being a brownie leader, and also not volunteering in the classroom anymore. It meant engaging my husband on some school field trips or other activities, and that meant that occasionaly he would have to take a day off. I still helped with homework and things at home. Even though other mothers didn't quite get it, I would have them drive my daughter to play dates at their homes, or have them drive their own child to my home. You have to accept the fact that you have to ask for help, and do it. Because, after all, we would do anything for our children, right? And in the long run, it is better for them to have their life as normal as we can make it for them. I still sacrifice for my children; I save my energy to do the driving I have to do (because I'm better now and can drive and do much more than before, thank God) in regards to my daughter's activities, and I don't do the other things that I might need to do because there will always be a time for them. I find that I do still try to make up for all of these years where we didn't do activities as a family because mom couldn't take the heat, or the drive, or the walking, or the whatever....of course, I still can't do as much as I would like, and the guilt is there but to a lesser degree. Best of luck to you with your decision. It may seem overwhelming, but most things seem that way to us until we get the help and then it all falls into place. Really! Karen

You are on your way!! Your enthusiasm and delight regarding your graduation and festivities really made reading your account a pleasure. Thank you so much for sharing. You are quite an inspiration. Keep that attitude, and nothing in this world will stop you from achieving what you hope for. God bless! Karen

Jan, Just another thought to add to all the many kindhearted ones offered already. After you talk to your doctor about maybe getting you a stronger dose of meds so you don't get the palpitations as often, (which you don't need to deal with right now), can you call your church (since your trust in prayer I figure that you probably belong to one) and speak to someone there and tell them you would welcome any help the parishoners can offer? I know that in a lot of churches, regardless of denomination, there is a committee that takes care of organizing meals, cleaning, whatever is necessary, for people that need assistance. Jeff will benefit from it too, so think of it that way if you hesitate to bother anyone by asking for help. God bless you, I am praying for your strength and health as well as your husband's healing and peace. Karen

Dearest Jan, Please know that I too will keep you and your husband in my prayers as well as forward on to others your request for prayer. We will ask for His mercy and healing, hope and peace. I would be reacting just as you are right now: my first thought would be to shout to all who heard me "please PRAY!" God keep you close. Karen

I live in Fairfax, Virginia. Born in San Juan, Puerto Rico. Also lived in Rome, Italy, Florida, Denver, San Francisco and Chicago.

I definitely cannot sit straight in a chair. I get very fidgety. It has to do with the blood not getting back to my head..or so I believe. So you are not alone! karen

Hi, Kare. You asked what meds I am taking and they are Lexapro and Toprol. Another prescription would be getting to bed early and doing some exercise, which I have been doing for 2 years now and what I find to be the most significant to my improved condition. (through Heart Enhancement Program at local hospital) Karen

I started feeling sick 14 years ago at the age of 38. I will be 52 this year. Overall, I have improved from the devasting way that I felt a good part of these years. I still have the fatigue, still have to lie down during the day, still get dizziness. But it is all less, especially the dizziness. OI is still a problem, but a little better. Exercise has helped me over anything else, and before I couldn't walk half a block without keeling over or my heart racing. Of course meds are helping in that regard too. Overall, better, but still not normal by any sense of the word. I am officially menopausal, and have really felt no difference with my symptoms. karen