Ron had another stroke.

On December 18th, 2010 Ron woke up feeling off. The only thing he could really express was that everything felt "backwards" We called for an ambulance and off to the ER we went. Normally it is 3 or 4 days before Ron is cognizant enough of the stroke to allow a trip to the hospital but this time we were at the ER within 24 hours of the original onset. We won't know specifically what triggered it but it did have to do with some medication issues. He suffered a 2cm to 3cm lesion deep within the Basal Ganglia part of his brain. Physically, he is doing alright. The kept him in the hospital 4 days. He still has some balance/weakness issues along with swallowing issues and a few other things. Mentally he is much more subdued. I think this stroke scared him more the others because he could actually feel the change. This month will be very active for us as we are moving and also trying to fit in lots of doctor visits for Ron. We haven't really been told what this means for his long term. We will be going to see the neurologist soon and hopefully we can work towards more clear answers. I was very grateful to have him with us for Christmas and being able to ring in the new year with my very best friend. We celebrate 10 years of marriage in a few days. Our New Year's Resolution to each other was to just live better, for ourselves. Thank you all for the continued love and support. This relapse proves how much we still need you.

WE WON!!!!

I apologize for not blogging sooner but we have been having some computer issues. WE WON HIS SOCIAL SECURITY CASE!! He is now considered disabled and will get social security disability each month. They deemed his disability started in August 2007 so he is already eligible for Medicare which is AWESOME since his cobra has now ended. His prescriptions alone without insurance are almost $1000 a month. All this Medicare stuff is confusing though. I really feel for the elderly folks who do not have people to help them figure it all out. Now that his medicare has started (which they back dated to July) we can get counseling started. We need help learning how to live with his "new" brain. Most of the irreparable damage from the strokes is in the frontal lobe which controls A LOT of things...mood, personality, decision making skills, forward thinking ability, etc. Things are finally starting to feel lighter. Thank you again for all of the love and support we have received since the beginning! (the picture is of Ron with our youngest nephew, Levi)

Social Security Hearing

Ron had his Social Security hearing yesterday, the 13th. The hearing went well according to our attorney. The vocational expert testified that with the limitations the judge set forth, there is no job that he is capable of doing...so now we wait. The judge is supposed to mail us his decision in the next month....I am just thankful that the hearing is over so now maybe I will not be quite so stressed. Thanks again for all the support!

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 friend...no 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 awhile....like 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.

Ron has been cleared to return to work!

Ron had his monthly doc visit Tuesday and she cleared him to return to work! He has an appointment with his company doctor Wednesday to confirm he can go back. He is so excited!! This was the news we were hoping for! We celebrated by spending the day with my sister and our nephew. Finally some positive change for a little while!

Quick Update

We had a pretty good Halloween. The only trick or treater we had was our niece Aberlie but that was a wonderful surprise. We have an appointment Tuesday with the Rheumy. Ron is hoping to be released to go back to work next week. He is feeling much better and has done very well on his taper. I will post again after the appointment. Thank y'all so much for all the continued support!!

Guess I should update

I did not realize I have not updated in so long. We went to the Cleveland Clinic in July. We saw a rheumatologist and a neurologist. They agreed with the diagnosis of Primary Central Nervous System Vasculitus. They told us that the treatment plan should be to do a very slow steroid taper, which we are doing at 2.5mgs at a time for now. He is down to 15 from a discharge dose of 40mg with no new strokes, so that is promising. We will taper down to 12.5mg next week. He is still on 150mg of Cytoxan. Once he gets down to 10mg of prednisone and remains stable for a month, he will be switching from Cytoxan to a milder and more tolerable chemo, Imuran. He will be on prednisone and Imuran for the rest of his life as long as he doesn't show any signs of new strokes. If he is no longer stable then the steroids go back up and back on the harsh chemo again. His local doctor thinks he should be ready to go back to work in January. He is very excited about that possibilty. Right now we are trying to keep all forms of the flu away from Ron. his doctor has advised to avoid crowded places at all cost and of course avoid known sick folks. She also advised he should wear a mask if he had to venture out in public, since even the regular flu would put him in the hospital. The doctor changed his anti depressant which seems to have helped the wild mood swings but we have been instructed to just accept this personality as close to the old Ron as we will ever get due to the multiple strokes on his frontal lobe. Each day we are just thankful to have another one, even the ones we take for granted. Thank you for reading and thank you everyone for all of your positive thoughts!