Wednesday, May 10, 2006

Challenged by Faith

Yesterday I had another appointment with my neuro-ophthamalogist. For those who don't know and have NF2 or Acoustic Neuroma, a neuro-ophthamalogist will become a regular part of your medical care team. This type of doctor is not the same as an optomitrist or a regular ophthamalogist. A neuro-ophthamalogist is also board certified in neurology and has expertise in visual problems caused by brain tumors. An optomitrist is not trained to deal with the special concerns of NF2 and other brain tumor patients. They fit people for glasses and more pertinent matters and conditions are referred over to the ophthamalogists. However, most ophthamalogists are not familiar with vision problems caused by brain tumors and do not know what to look for. Therefore, it is important to find centers such as hospitals who have doctors who address these issues and also to look the board certifications of medical staff when choosing a doctor.

Alright blogger is acting kind of weird today. I started this post on Wednesday but never finished it. My appointment was on Tuesday May 9th. I have been having problems with my eyes where it felt like somebody unexpectedly lit a camera flash in my eyes temporarily blinding me. This was happening on a daily basis and seemed to occur when I was rising from a resting position (from lying down to sitting or from sitting to standing).

When it occured, I could not see and had to grab hold of something stationary for stability. Fortunately each episode did not last long. It seemed to dissipate in under a minute (within seconds). Basically when it happened, I had to stand there and wait for it to pass. I imagine if somebody was looking at me and noticed, it would appear that I had blanked (or spaced out) for a few seconds.

Here is the email I sent to my doctors on April 28th:

"My Major Concern: I am having visual disruptions where my field of vision is narrowed or blocked at periods of time. The effect is similar to the blinding one would experience after having a camera flash bulb go off in his/her eyes. This has been happening frequently (nearly everyday) since I started experiencing the headaches. I notice this occurs when I am rising from a sitting or resting position. The effects lasts for seconds and when it happens I need to grab something for bearing and stand there until I can see normally again. It seems to be more apparent in the right eye and I know my peripheral vision field is greatly decreased when this occurs.

I would feel much better having you look at my optic nerves now that I am off the Diamox and also administering another peripheral vision test to rule out possible swelling of the optic nerves again."

My neuro-ophthmalogist immediately responded and a sooner followup appointment was made. Seeing as I go to the UW Medical Eye Care Clinic which is also a teaching hospital, I am first seen by resident doctors. For the first time ever, I lost control and broke down once they left the room. There was nothing bad about the resident doctor and student, nor the captioner. She actually told me what I was expecting.....that my optic nerves were swelling again.

For whatever reason, it just all became too much and too overwhelming at the moment. I just totally let myself become disappointed. I wanted to believe that this was all going away and ending. I was tired of NF2 and did not want to deal with in anymore....NO MORE...IT TOOK ENOUGH!

When she told me the optic disk was swelling and that they needed to set up the periferal vision test, fear shivered my body. My thoughts were "Oh my God why is it swelling again? What if it does not stop? Will they have to open my head and do brain surgery afterall? Would I live? Would I become more messed up? Will I become blind?" It was a total snowball effect of fear and anxiety. The more I tried to suppress these feelings deep inside, the more it took over me and I could not control it.

Remember that I cannot cry. I lost the ability to form tears. I have not cried tears since probably October of 2004. I realy don't quite know how to explain what happens to me. I guess it is sort of a combination of the "trying not to cry but can't control it effect" coupled with hyperventilation and shaking. This episode was somewhat mild though. The poor captioner was a male and this was the first time I had him! He was the only one in the room with me and I think he asked me on three occassions if I was alright. I finally told him that I am not able to cry and sometimes I kind of hyperventilate. LOL I don't know if that offered him any relief. I crack up thinking about it now.

I did manage to calm down and maintain my composure by the time the medical staff entered the room again. I knew I had to stop shaking in order to take the test. Also, I knew I was starting to loose it and let my emotions get the best of me. I told myself that I walked through this thing with faith and that I had to trust it. I find this is often true of many things in general (that it does eventually work out but sometimes you are really run on the ringer or you feel like you are clinging to the edge).

Later the doctor came in and did agree that my optic nerves were swelling but it was a mild swelling (more of an increase on the side with the larger tumor). He instructed me to get back on the medicine again as it seems to be working in reducing the swelling.

I asked what were to happen if the swelling does not cease and if I would go blind. He said that there is always a risk that I could go blind but that it was unlikely. An option is to undergo surgery to reduce the pressure around the optic nerves but he did not think that it was something I needed at this time as the medicine seems to subdue the swelling and as of now it is mild. He did not know if and when the swelling will stop. I am a case where there just are not answers and he just did not know. It is simply a matter of hoping and praying...FAITH.

That afternoon I was a little down. I kept observing people and wondering about their lives. I have done this over the years when I have my moments. I watch people and wonder about their lives. I wonder if they realize how lucky they are to walk from point A to point B without even really having to think about it. Do they really know all the gifts they have? I contemplated their lives and my life. Does it even enter their minds that something like this could happen to them. Then I saw some people who looked like they could have been doctors. I wondered if there was anyone who was becoming a doctor or who was a doctor who became diagosed with NF2 or some other life altering or dehabilitating illness. Probably not NF2 or I or someone I know with NF2 would have heard about it. What would a doctor do if they found out they had NF2? What decisions would they make?

While distracted from my reading, I fell asleep in the sun on the flat black granite sculpture outside the hospital. When I awoke, I focused on the metal beam structures overhead. It was beautiful and I saw it in a way that I don't think I ever would had I not been in that position at that moment in time. It would have made a fantastic photo! I was amazed that I went to graduate school for 2 years at that University and had never even noticed the sculptures or place where I was sitting.

As the sun had changed position it became a little chilly on the side of the building where I was sitting. I decided to pay visit to the sun on the other side and sit in a park like area I had viewed from windows above but never took the time to visit. When I finally figured out how to get to the other side, there was a nice wooden arbor near some sculturesque built in the ground bird baths. It was all very artitically designed and the curves flowed from one structure to another. I found a nice place on the wood to sit in the sun and read.

After awhile I noticed that 4 birds had joined me at ground level (2 robins and 2 beautiful black birds with feathers that changed to purple, greem and brown in the sun....magpies?) The robins were a little shy and cautious. However, one of the black birds was a free spirit and did not seem to mind me at all. He (or she) came to edge of the water closest to me and took a bath in full splendor! It was an amazing site to watch the bird fully enjoying itself without minding me at all! The robins were still wary but did draw nearer. Soon the other black bird companion took part in the activity. I was completely glued and enjoyed watching them. I then thought to myself, had I not been in this moment and this time, I would have never witnessed this moment. Everyone else was busy scurrying about. It made me think about the many things I have had the opportunity to observe, reflect on, and enjoy, when I know I probably would not have the time to contemplate if none of this had ever happened to me.

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