I canceled the FCE

Hi everyone. Thank you all for taking the time to write and advise me. I went ahead and canceled the FCE due to several reasons. 1: my neurosurgeon and pain management physician was kind enough to perform an FCE and forward it to them. 2: it was scheduled for this past Friday, which would have robbed me of any possible time with my daughters (I sleep for days after physical exertion) 3. This is Spring Break week and if I want any hope of spending time with my kids, an FCE would most likely keep me in bed for most of this coming week also. I went ahead and emailed my LTD rep the FCE from my doctor along with a letter he wrote to him stating that disregarding his FCE, my past medical records, NCV’s/EMG’s, and all the records that the insurance company has on file for me is a blatant disrespect for not only his medical education and experience, but all of my current treating medical professionals who have diagnosed me and deemed me disabled. He said that his (the ins rep’s) bullying tactics of threatening to cut my benefits is uncalled for and unprofessional and he is requesting that the bullying stop now!
My LTD representative whom I have dealt with for over a year no stopped my benefits as of Friday. I sent him an email letting him know why I could not make it and he said that I have until Monday to send him all the information from my doctors including the FCE, which he had not seen yet, and doctors notes from a new treating phi that I have who has deemed me totally bedridden, due to the fact that I sleep for 3 days at a time.
I went ahead and sent all the new medical records, the FCE and the not so nice but true letter from my near. Now I guess we will just have to wait and see.
An interesting thing happened this weekend. It was the first weekend/Saturday I have felt well. I mean really well. I was able to join my husband for the first time in over a year in taking our kids to the zoo!!!! I was so excited!!!! My 5 year old went with my husband and my youngest daughter 2 weeks ago for the 15th time with me because I was in bed. When they returned, I asked how it went and she started bawling. I hugged her and just asked “honey, why are you so upset? Didn’t you have a good time”? she said “because it’s always daddy, Lauren and e. You are always in bed. No one even knows I have a mommy because you never come to my dance shows, or my karate classes, or any school trips. You are always in bed and I miss you so much”!
There are no words that can mend that kind of heartbreak in a 5 year old. I hugged an kissed her and assured her that mommy and my doctors are working as hard as we can to figure this out so that she won’t have to miss me so much and I wish I could be there with her at all of her functions, but mommy’s reality, for now, is my bed.
So yesterday I surprised them with a family trip to the zoo!!! I have been taking a new medication called Imunovir which has helped my energy level. Enough that I was able to join them for the first time, in a long time. Today, I paid the price and woke up at 7:30PM, but it was worth it!!! We had so much fun!! I had to use my cane, and we rented one of those big family rickshaw looking bikes thar my husband pedaled, but we did it!!!our first family outing in over a year!!!! My little girls were so happy and they did not believe I was going until I actually got in the family van! What a great day!!!
A perfect day for a private investigator to film me for my LTD company! Wouldn’t you guess it. I guess since they are making their decision up next week regarding my benefits, they have been watching me like hawks. It’s just funny how the first day I have a family day in over a year, I catch someone recording me. I wish they could have recorded me today in bed until 7:3pm and waking up only because of the pain I was feeling In a dream!
Oh well, what can you do right? I am happy that for once my girls didn’t feel abandoned by their mother and we were able to share a very happy day together. I am glad that I was able to Shia them the light that I am seeing on this CIDP journey and that the good days have to be taken advantage of!
I just hope I don’t lose my benefits for having one good day out of 365.
I will keep you all posted. Again, thank you for all your advice and taking the time to write and care.
Be well.