Cupie Doll - except that's the back of his head
Sitting up in the big chair like a big boy!!
Tuesday, November 9, 2004
Cute pics of Nathaniel
Cupie Doll - except that's the back of his headSitting up in the big chair like a big boy!!
Monday, November 8, 2004
Saturday, November 6, 2004
All done with IV steroids
After last round of steroids my vision came back to about 30%. So I have some peripheral vision but only when there is motion. That is still the case now in 11/2008. It has required re-learning how to look for things (like my kids in a crowded church or play center), how to read out-loud so that the words aren't jumbled (dominant eyes read... non-dominant eyes jump around as place keepers - I lost my dominant eye). There are more things but I can't think of them at the moment.
I made it through the holidays ok. By February I was spending most days struggling to get through. Some days all I can do is get myself, the kids dressed and fed. Then I lay on the couch while they watch cartoons until naptime.
Mid-February Todd made me go on anti-depressants (typical of MS patients) which helped within 4 days. I was doing things again.
I made it through the holidays ok. By February I was spending most days struggling to get through. Some days all I can do is get myself, the kids dressed and fed. Then I lay on the couch while they watch cartoons until naptime.
Mid-February Todd made me go on anti-depressants (typical of MS patients) which helped within 4 days. I was doing things again.
Thursday, November 4, 2004
So far, so good!
2nd round of steroids down. No changes in vision. Sleep was ok last night with Tylenol PM.
God has been good... in spite of my preoccupation the kids have been calm.
God has been good... in spite of my preoccupation the kids have been calm.
Wednesday, November 3, 2004
IV Steroids
The nurse came mid morning. She brought everything I would need. She prepped me, inserted the IV (which will stay in until Friday the 5th after my 3rd and last bag.) She gave me instructions, started the first bag and left.
So far, so good... but there is no affect. In fact, my eyesight (in right eye) is completely black, now. That had started yesterday.
This is scary - I could wake up and not see in my left eye. Then what?? How would I take care of a 3 year old and 18 month old.
So far, so good... but there is no affect. In fact, my eyesight (in right eye) is completely black, now. That had started yesterday.
This is scary - I could wake up and not see in my left eye. Then what?? How would I take care of a 3 year old and 18 month old.
Tuesday, November 2, 2004
Dark enough!!
Now my right eye is really dark. I've read on-line enough now about IV steroids being used to treat Optic Neuritis.
While in Avrom's office I saw the name Megan Nussbaum listed as an MS contact on some literature in Avrom's office. Her name sounded familiar but I wasn't sure why. Then I remembered! She was a bridesmaid in my sister-in-law's wedding a few months ago. I still had her number in my cell phone so I called.
Megan was surprised that Avrom hadn't prescribed the IV Steriods. She asked if I wanted to see the neurologist she worked for who specialized in MS. Jackpot! She got me an appointment for Nov 8th (2 weeks before seeing a general neurologist). It was later that I found out that Ram was the premier MS specialist in our state and that people came from out of state to see him. Ram particiated in numerous drug studies which allows one to obtain free meds.
I called Avrom's office and asked for the steriods. They scheduled a nurse to come to my house the next day. If I have trouble sleeping... call back and they would give me something to help. Often IV steroids interrupt sleep.
While in Avrom's office I saw the name Megan Nussbaum listed as an MS contact on some literature in Avrom's office. Her name sounded familiar but I wasn't sure why. Then I remembered! She was a bridesmaid in my sister-in-law's wedding a few months ago. I still had her number in my cell phone so I called.
Megan was surprised that Avrom hadn't prescribed the IV Steriods. She asked if I wanted to see the neurologist she worked for who specialized in MS. Jackpot! She got me an appointment for Nov 8th (2 weeks before seeing a general neurologist). It was later that I found out that Ram was the premier MS specialist in our state and that people came from out of state to see him. Ram particiated in numerous drug studies which allows one to obtain free meds.
I called Avrom's office and asked for the steriods. They scheduled a nurse to come to my house the next day. If I have trouble sleeping... call back and they would give me something to help. Often IV steroids interrupt sleep.
Devastating news
Each year at the end of October just before cabin rates go up for the fall season, Todd and I take a few days away to rest and celebrate our anniversary. This year was no different and I especially needed it. So on October 31st we left.
We dropped the kids off at Grandma Liz's house. We made deep dish pizza for dinner from the food we had packed sat in the hot tub for a bit with some wine. The next morning my vision in my right eye was bad. It looked fuzzy. When looking at a page in a book it looked like pieces of letters were missing. I called mom who said it didn't sound like retinal detachment and I should call my eye doctor. He sent me to an OD in a nearby town.
We spent all morning there while the OD examined my eyes between scheduled patients. At the end, he said there was nothing wrong with my eye. He wasn't sure what was going on and we would need an ophthalmologist. We could go to one at the University nearby that afternoon or we could wait and go to one when we returned home.
Since the kids were already being watched we opted to go to the University. We thought I probably had retinal detachment which requires immediate surgery so we packed up all our things at the cabin, checked out, and headed out.
All afternoon the Ophtham. did tests on me - again between scheduled patients. I was nervous and scared because I hate surgery after having so many surgeries as a child. At 5:15 all test were done and he sat down with us. "I pretty sure you have Optic Neuritis. It means the optic nerve is inflamed preventing the message to get from your eye to your brain. 50% of the people who have this either have or go on to have Multiple Sclerosis." We were devastated. We left shell-shocked, drove back home.
On Nov 1st, we went to the see the recommended Neural Ophthalmologist in our town. Avrom performed the same tests - vision, Fields test, dilation... After 3 hours (he worked me in between scheduled patients), he said it could be and probably was Optic Neuritis... but an MRI was needed to verify any inflammation or lesions. He launched into the dangers of MRI's (it's more dangerous to stand in front of your microwave).
I was prepped for an MRI which strangely was performed in a mobile MRI facility parked outside the hospital. It was scary. I was in this tube with my heart pounding and no human contact for about 45 minutes. It is close quarters in those things!
Afterwards, Todd and I grabbed some lunch and headed into Avrom's office again. He looked at the films... we asked questions but he would only tell us that I had Optic Neuritis... nothing more. He went into the possible treatment but soundly described that studies have shown that using steriods did not return eyesight any faster or better than having nothing. He told us it could get worse before getting better.
We asked about the possibility of MS. He simply would not answer no matter how we asked or how hard we pushed. His office made an appointment for me for 3 weeks later with a neurologist.
We dropped the kids off at Grandma Liz's house. We made deep dish pizza for dinner from the food we had packed sat in the hot tub for a bit with some wine. The next morning my vision in my right eye was bad. It looked fuzzy. When looking at a page in a book it looked like pieces of letters were missing. I called mom who said it didn't sound like retinal detachment and I should call my eye doctor. He sent me to an OD in a nearby town.
We spent all morning there while the OD examined my eyes between scheduled patients. At the end, he said there was nothing wrong with my eye. He wasn't sure what was going on and we would need an ophthalmologist. We could go to one at the University nearby that afternoon or we could wait and go to one when we returned home.
Since the kids were already being watched we opted to go to the University. We thought I probably had retinal detachment which requires immediate surgery so we packed up all our things at the cabin, checked out, and headed out.
All afternoon the Ophtham. did tests on me - again between scheduled patients. I was nervous and scared because I hate surgery after having so many surgeries as a child. At 5:15 all test were done and he sat down with us. "I pretty sure you have Optic Neuritis. It means the optic nerve is inflamed preventing the message to get from your eye to your brain. 50% of the people who have this either have or go on to have Multiple Sclerosis." We were devastated. We left shell-shocked, drove back home.
On Nov 1st, we went to the see the recommended Neural Ophthalmologist in our town. Avrom performed the same tests - vision, Fields test, dilation... After 3 hours (he worked me in between scheduled patients), he said it could be and probably was Optic Neuritis... but an MRI was needed to verify any inflammation or lesions. He launched into the dangers of MRI's (it's more dangerous to stand in front of your microwave).
I was prepped for an MRI which strangely was performed in a mobile MRI facility parked outside the hospital. It was scary. I was in this tube with my heart pounding and no human contact for about 45 minutes. It is close quarters in those things!
Afterwards, Todd and I grabbed some lunch and headed into Avrom's office again. He looked at the films... we asked questions but he would only tell us that I had Optic Neuritis... nothing more. He went into the possible treatment but soundly described that studies have shown that using steriods did not return eyesight any faster or better than having nothing. He told us it could get worse before getting better.
We asked about the possibility of MS. He simply would not answer no matter how we asked or how hard we pushed. His office made an appointment for me for 3 weeks later with a neurologist.