Sunday, June 13, 2010

Long Over Due Update

I did not realize how long it has been since I updated this. So much has changed. Ron had been cleared back in November to return to work. The company doctor ordered a physical and a neuro psych exam. Ron passed the physical with flying colors. The neuro psych exam however showed us just how damaged his brain is. The neuro psych exam revealed that Ron has limited reasoning skills, limited forward thinking ability, difficulty with decision making, apathy, limited concept of consequences and risks, limited control over mood and demeanor, difficulty with interpersonal relationships and a whole host of other weird brain things. The doctors recommendation was that Ron could not hold a job with responsibility or decision making. Which adds up to nothing. Ron will never be a fireman again. He will never be a paramedic. The neuro psych results were a huge blow because we thought a lot of the mood and personality stuff was temporary. The damage however is extensive and non repairable. Ron is devastated that the career he loved so dearly is now over. We are both having a lot of trouble accepting everything. We of course play the why game... why did he get sick...why did this happen..etc. Ron is almost completely a different person personality wise. The man I married, my best longer exists. So as I am trying to grieve the life I lost, i am having to learn how to live with this new Ron. It isn't easy and most days I just want to fall apart. Very few of our friends have stuck around. It makes me very sad for the friends I have lost but it devastates me for Ron because he doesn't understand why everyone has deserted him. I suppose people would rather just walk away from him, rather than take the time to understand how to communicate with the new him.
I can definitely say that I too have changed because of his illness. I have been forced to find the strength within myself. To learn how to take care of myself. To stand up for myself and my needs. Most importantly I am learning to love me for who I really am...not who I think others want me to be. I have some very close friends to thank for this "awakening". These friends have gently reminded me of the life and happiness that I deserve. I will forever be grateful for the friends willing to walk me to the edge, hold my hand and jump with me.
So where are things now? Ron has tapered all the way down to 6 mg on the steroids and just started his second month on the new chemo, Imuran. Ron was denied by Social Security Disability for the second time in March. We received a call from our disability attorney at that time, advising us the next step was a hearing in front of a judge. Once requested we were told it could take 12 to 18 months to get a hearing. The attorney called us in May and we already have our hearing date, and it is in September, of this year. They were shocked. We have to get some tests and stuff done before the hearing so we have plenty of evidence for the judge. Ron's employment will be terminated on June 22. After that he will go on COBRA insurance until we get his disability approved. We are not really sure how things are going to play out. This summer is going to be quite stressful but I am still grateful to have each and every day. This has been one hell of a roller coaster ride. I would really like to ride something a little smoother for a merry go round. A huge thank you to the ones who have stood by us from the beginning or hopped on along the way. We are so very grateful for all the love and support of our friends and family.