I think last week's post was a little traumatic for me to relive. My hope is that I can continue to heal through these blogs, without all the effects of reliving the emotions.
I left off with the story of our first encounter with diabetic retinopothy. To save some time, I will fast forward through the 4 years of trauma. From that appointment at Kaiser at 10pm, Doug endured 4 years of surgeries, laser treatments, daily (or every other day) pressure checks, etc. It seems like everything that could go wrong with each surgery did go wrong. It got to the point that I would ask Doug's retinal surgeon to give me "worst case scenario" with each surgery because there was a good bet that if something was going to go wrong, it did!
After a couple of his surgeries to stop the bleeding, he developed further complications which caused a build up of pressure. His other surgeries caused cataracts to develop which resulted in subsequent surgeries to remove the cataracts. In between surgeries he had more laser treatments which were done in an attempt to bypass surgery- which resulted in a surgery anyway. It was a never ending battle.
Of course every time Doug had to have surgery the usual stress and anxiety was felt, but its the domino effect to the rest of our life that I had not expected. All of the trauma with Doug's eyes carried over into every aspect of our lives. At work we were in the process of renewing our contract with another agency. Things were hectic and I was training the staff at our partner agencies which meant I could not take time off work. Besides that my boss wasn't very sympathetic to my family needs so I didn't share very much about was going on- besides I didn't really want my personal business all over the office. Subsequently we tried scheduling all of Doug's surgeries as early as possible in the morning so that I didn't have to miss much work. Trying to arrange all of this, get Doug to the hospital for surgery at 3, 4 and 5am was difficult. Then I had to go to work as soon as he was out of surgery. Leaving him at home was difficult, but my parents were extremely generous with their time and did everything they could to help us.
Then there was Matthew. He was so young and didn't really understand what was happening. In all fairness- neither did I! It was difficult trying to help Matthew understand why Daddy was having surgery all the time, why he had to stay in the hospital, and why when he came home he had to stay in bed with his face laying flat. Matthew wasn't understanding why Daddy couldn't take him to school, get him up in the morning, take him to breakfast once in a while and do all the things Daddy had been doing. Furthermore, Matthew didn't understand why Daddy couldn't play with him. I did my best to run the household and take care of Doug, but our lives were spiraling and I felt like I was at the bottom of the funnel cloud.
With each surgery was more and more loss of vision. I sat through follow up appointments and post op appointments while they had Doug read the vision chart. I watched him at home as he was loosing sight of more and more things in his environment. He was running into cupboard doors, falling on the steps of the porch, missing the car door handle when he was trying to get into the car, etc etc. The hardest part I think was watching him chase food around his plate at mealtime. Its like he was loosing his ability to function independently--and there was nothing I could to stop it. He literally went from bad to worse right before my eyes.
Through all of this Doug was fired from his job. This happened just a few months before our wedding. I can honestly say I never saw him so distraught. To this day, nothing has topped those feelings. With all of this Doug was slipping into a depression, and I was trying to stay about water (yet slowly sinking). I felt like we didn't have the support of anyone- at least anyone that understood. Nobody came to us to see if they could help. Nobody called to offer to pitch in. The only 2 people that were there unconditionally was my parents. My dad came over to mow our lawn. My mom stayed with Doug whenever we asked. She also sat with us at the hospital and tried to support me. She watched Matthew for us when I had to have Doug at the hospital really early in the morning. As much as they did for us, I needed more. I needed someone to talk to. I needed help processing all of this. I needed help financially. We were now living on just my income and that wasn't nearly enough. We were constantly running out of food. I was always on the phone asking the landlord for an extension on the rent. I rarely had enough gas money to get to work and see clients. The worst part was the immense loneliness I felt. I still don't know how I functioned every single day. I think the trauma we went through is why every time I hear that something bad happens to my friends, I feel this immense need to help. I had never felt so alone and I can't imagine anyone else feeling that lonely.
Once Doug's eyes stabilized (something I never thought would happen- nor do I believe it is happening now) we were connected to the Blind Center in Stockton. They are the most amazing people I have ever met. Joanie came to our house to teach Doug how to function safely in his environment. She taught him how to use a cane for the blind, how to cook, how to take care of some of his personal needs (the ones I would allow her to help with, lol), and how to use public transportation. Before I go any further, let me take a moment to publicly apologize to her for my behavior...
I was not nice to Joanie. I am embarrassed to admit that, but I was actually mean to her in the beginning. I was angry with what was happening and I lashed out at her the most. I had such an incredibly hard time allowing another social worker in My home to take care of MY husband. To this day I'm not sure I fully comprehend what I was feeling, but I do know that I had an extremely difficult time allowing her to come into my home and work so closely with my husband. And for that, I am sorry. I know now that I should have been a little more accepting of her help. Through it all, Joanie was fantastic and did everything she could to work with us together as a whole unit. Joanie, I apologize and I am grateful to you for everything.
During one time in particular while Joanie was working with Doug and the cane in the neighborhood, he fell on the sidewalk. When he came home and was badly bleeding from his leg, I was furious! All I could think is she was the person who was suppose to be teaching him to be safe. How could she allow him to fall and get hurt?! I'm not sure what the purpose of that rant was, but I just felt the need to say it. That was not her fault. Accidents happen and I know she didn't intentionally let him fall. I think I just felt like I should have been there to save him from falling. I wasn't there...
Fast forward to the present. Today Doug is completely independent. He keeps track of his own medication, he does his insulin as independently as he can ( I still draw the correct units). He takes care of all his personal needs. He takes the bus wherever he needs to go and most importantly, he takes care of our children.
I still have a difficult time accepting where we are today. There are times I am grateful that he is home and takes care of the kids and the house, but there are many other times I wish we were a 2 income family. I wish we could afford a home of our own and had a decent car to drive. I wish we BOTH had careers that we enjoy and that I didn't have all the pressure of taking care of us financially. I wish we could have had the lives that I feel like we deserve, but I do know that we have the lives God wants us to have. I need to be OK with that ~ and in time I will be....
Sunday, January 23, 2011
Monday, January 17, 2011
Where to Begin??
I'm not sure where to begin here. I have a thousand things I want to write about, but not sure what should go first. I think the best place to start would be to list all of the things I would like to write about so that I can come back to them one at a time. So, here they are. I'd like to write about my husband and how amazing he is. I need to write about my journey to weight loss. I'd like to write about my struggles with breastfeeding and how proud I am of our journey. I really feel like I need to write about our experiences with Doug's loss of vision. I would also like to talk about our journey with parenting and what it means to me to a mother to Matthew and Nicholas.
I have had this idea about blogging for some time now. I would like to have a place to collect my thoughts and put them "out on paper" so to speak. I have joked around the last 5 years about writing a book because it is hard to believe we went through all we did and are able to live to tell about it all. After reading Doug's first couple of blogs where he discussed some of his thoughts while going through the process of vision loss, I felt like there was so much missing; specifically all of the thoughts and feelings associated with the disease. I'm hoping that by writing about some of it, maybe it will help me to process some of this.
Here is my version of what happened...
I was over at my parents house right after they moved to Stockton. Doug was at work and there was nothing out of the ordinary about the day. Next thing I know, I received a call on my cell. It was Doug. He said he was seeing a black spot in his vision and wasn't sure what it was, but he thought he should have it checked out. He told me he was on his way to Dameron ER and asked me to meet him there. I said I would be right there. I then left Matthew with my parents and drove quickly to Dameron.
My mind was racing the entire drive. I went from thinking "This is ridiculous. There is nothing wrong with him" to "Oh my God, what if there is something seriously wrong!". Little did I know, Doug already had an idea of what was going on. I had heard before that people with diabetes either have problems with infection and in their limbs and need to have them amputated, or they have problems with their eyes. I had no idea what was going on with Doug's eyes had anything to do with his vision!!
As I sat in the ER with Doug, I was somewhat irritated. They did not make him wait in the waiting room at all. By the time I arrived, they already had Doug in the triage area waiting to be seen by the attending doctor. We were then moved into a room less than the size of a closet. They had an eye exam chair that Doug was sitting in and there wasn't enough room for chair and the doctor. He sat in the chair while 2 different doctors examined his eye. Nobody was saying ANYTHING at all! Doug still hadn't shared with me what he was thinking. On several occasions I asked him if he was seeing something that looked like a web. He said no. All I could think is that this was probably a huge waste of time and he probably has a stigmatism. I have one in both of my eyes and I was certain that is what was wrong with Doug. We sat in the ER for literally hours. Doug had called me very early in the afternoon. It was now around 8pm.
Finally, another doctor came into the room in somewhat of an urgency stated he had gotten in contact with the opthamologist at Kaiser and was sending Doug by ambulance to Kaiser to be seen by their specialist. I started to panic. The doctor stated he didn't know what was going on, but thought that Doug should see their doctor right away. It was now around 9pm. I asked if I could take him in my car to Kaiser. The doctor was reluctant, but said as long as I promised to go straight there, I could take him. He gave us the instructions, then told us the doctor was waiting for us there.
I immediately started to cry. I was so scared. I now had somewhat of an idea that whatever was going on was serious, but I didn't know what it was. Doug still didn't say anything to me about what was happening. We arrived at Kaiser and were met by the opthamologist. He explained a little about what has happening, most of which was a blur. He said that we needed to begin laser treatment immediately in an attempt to slow down the bleeding, but we would need to see the retinal surgeon the very next day.
Let me back up. What was happening was Doug had developed diabetic retinopathy. This means that the blood vessels behind the retina were leaking blood into his eye (into the path of vision). The way I understand it is the laser treatment is done to basically cauterize the blood vessels. Anyway, to summarize an extremely long day and night, the laser treatments needed to begin right away. The doctor tried to be humorous. He was very personal with us and tried to explain the best he could what was happening, what he was doing and what we should expect in the future. Out of any doctor we could have encountered that evening, I'm glad we met him. He understood Doug is a photographer and we were terrified. He really did his best to help us to begin this process into permanent disability. We just didn't expect that this is where we headed.
My hope is that putting some of this in writing can help me to begin the healing process of where we started, and how we came to this point. With that, I'm am going to catch my breath and write more later.
I have had this idea about blogging for some time now. I would like to have a place to collect my thoughts and put them "out on paper" so to speak. I have joked around the last 5 years about writing a book because it is hard to believe we went through all we did and are able to live to tell about it all. After reading Doug's first couple of blogs where he discussed some of his thoughts while going through the process of vision loss, I felt like there was so much missing; specifically all of the thoughts and feelings associated with the disease. I'm hoping that by writing about some of it, maybe it will help me to process some of this.
Here is my version of what happened...
I was over at my parents house right after they moved to Stockton. Doug was at work and there was nothing out of the ordinary about the day. Next thing I know, I received a call on my cell. It was Doug. He said he was seeing a black spot in his vision and wasn't sure what it was, but he thought he should have it checked out. He told me he was on his way to Dameron ER and asked me to meet him there. I said I would be right there. I then left Matthew with my parents and drove quickly to Dameron.
My mind was racing the entire drive. I went from thinking "This is ridiculous. There is nothing wrong with him" to "Oh my God, what if there is something seriously wrong!". Little did I know, Doug already had an idea of what was going on. I had heard before that people with diabetes either have problems with infection and in their limbs and need to have them amputated, or they have problems with their eyes. I had no idea what was going on with Doug's eyes had anything to do with his vision!!
As I sat in the ER with Doug, I was somewhat irritated. They did not make him wait in the waiting room at all. By the time I arrived, they already had Doug in the triage area waiting to be seen by the attending doctor. We were then moved into a room less than the size of a closet. They had an eye exam chair that Doug was sitting in and there wasn't enough room for chair and the doctor. He sat in the chair while 2 different doctors examined his eye. Nobody was saying ANYTHING at all! Doug still hadn't shared with me what he was thinking. On several occasions I asked him if he was seeing something that looked like a web. He said no. All I could think is that this was probably a huge waste of time and he probably has a stigmatism. I have one in both of my eyes and I was certain that is what was wrong with Doug. We sat in the ER for literally hours. Doug had called me very early in the afternoon. It was now around 8pm.
Finally, another doctor came into the room in somewhat of an urgency stated he had gotten in contact with the opthamologist at Kaiser and was sending Doug by ambulance to Kaiser to be seen by their specialist. I started to panic. The doctor stated he didn't know what was going on, but thought that Doug should see their doctor right away. It was now around 9pm. I asked if I could take him in my car to Kaiser. The doctor was reluctant, but said as long as I promised to go straight there, I could take him. He gave us the instructions, then told us the doctor was waiting for us there.
I immediately started to cry. I was so scared. I now had somewhat of an idea that whatever was going on was serious, but I didn't know what it was. Doug still didn't say anything to me about what was happening. We arrived at Kaiser and were met by the opthamologist. He explained a little about what has happening, most of which was a blur. He said that we needed to begin laser treatment immediately in an attempt to slow down the bleeding, but we would need to see the retinal surgeon the very next day.
Let me back up. What was happening was Doug had developed diabetic retinopathy. This means that the blood vessels behind the retina were leaking blood into his eye (into the path of vision). The way I understand it is the laser treatment is done to basically cauterize the blood vessels. Anyway, to summarize an extremely long day and night, the laser treatments needed to begin right away. The doctor tried to be humorous. He was very personal with us and tried to explain the best he could what was happening, what he was doing and what we should expect in the future. Out of any doctor we could have encountered that evening, I'm glad we met him. He understood Doug is a photographer and we were terrified. He really did his best to help us to begin this process into permanent disability. We just didn't expect that this is where we headed.
My hope is that putting some of this in writing can help me to begin the healing process of where we started, and how we came to this point. With that, I'm am going to catch my breath and write more later.
Thursday, December 16, 2010
Happy Holidays
Since the Christmas cards are not even created yet, we thought the next best thing would be to at least post the Christmas pictures of the kids that Doug took last weekend for the cards...
First we have Matthew & Nicholas
Next comes Nicholas, Lyric and Brayden and a few more of each... And we can't forget about Max!
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