After many months of being side tracked - I have returned. Boy did I get sidetracked! When asked about my migraines recently, the discussion turned to stress levels and my response to their inquiry was that I lead a fairly stress free life. I really do! I didn't always though. I look back at those times in my life, where your blood boils and you feel like you are going to explode, and I realize now that the things that stressed me out were so minor. I was venting to the world for things in my life that I had control over. I could control how I reacted to them and I am telling you now, from the other side of that tunnel, it is not worth the frustration of getting mad. The outcome wouldn't have been any different if I had just decided to ride the wave.
I have been unable to post for so many reasons, the main reason is that shortly after my November post, my boyfriend ended up in ICU with emergency brain surgery. For months we had tried to get someone to take us seriously. We had visited Urgent Care and were sent home with a sinus infection and small pharmacy of meds that made no difference. We then visited the Emergency Room and were sent home with an ear infection and more meds that made no difference. Our doctor finally recommended us to a Neurologist as he had unexplained debilitating headaches that were rendering him unable to work. After an MRI, we found that the doctor had gone on vacation and, while she relaxed on a beach somewhere in Mexico, we were told to wait a week to get the results. I, being the bitch that I am when I am told that someone I love is in pain and the rest of the world is blind to that, flipped that switch and demanded that they have a partner look at the results and I would expect to hear back from them by the end of the day. It was amazing how easy it became to transition into that role and how I would stop at nothing to make sure we were heard. That saying came to mind, you know the one that says you don't mess with a Momma Bear's cubs?! It does not limit itself to just my cubs. My life mate was in distress and I was pissed. I was mad at the system that was put there to help you and it seemed like nobody cared that he was in pain.
We were told, that afternoon I might add, that he had fluid in his brain and the lining was unusually thick but they felt it was best to wait. Wait for what? Until he passed out from the pain? Until he couldn't walk? Until he died? They told me it was so that they could get him into Mayo Clinic so that we could get a second opinion. For those of you that are not familiar with Arizona, this is the place that the elderly flock to in the winters to avoid the cold. They plan this every year and, as a result, they make their doctor's appointments months in advance. There was no way he was going to be seen at Mayo before 2020. I started researching other doctors and ways that I might get into Mayo without having to go through that process. I found a neurologist that had just signed on with Mayo but she had her own practice. I figured this was a back door and I called them up. At this point I was shameless and when the receptionist answered, I asked her if she had five minutes to hear me out.
After I gave her my sob story, she put me on hold and went to speak with the doctor. She returned after a few minutes and told me to bring him in on Saturday. I broke down crying. Two days. In two days we would have some answers. I was shocked that I had managed to get an appointment but I was more shocked that someone actually cared enough to get us in on a weekend, when they were usually closed. I requested his records be forwarded to this doctor and they refused. The original neurologist said that they were trying to get him in as soon as they could and felt it would not be in his best interest to start over. I informed them that if they did not forward his records to whomever I wished, that I would physically come into their waiting room every day until they did. His records made it to the new doctor within the hour.
In the first few minutes of our visit with the new doctor, she asked us more questions than we had been asked in the three months we had been dealing with this. Dr. Travis decided that she wanted us to go to the ER and have them do a recent CT scan as well as a spinal tap. She was concerned about spinal fluid leaking and felt it was safer to be at the hospital to do it but when we arrived, as we were immediately escorted back because she had called ahead, the ER did some tests and found that it would be too dangerous to do the spinal tap. We would see a Neurosurgeon in a week and go from there.
We arrived at the neurosurgeon and were prepared for the same treatment. Our rock star doctor walked in and asked some questions. Dr. Yusupov had reviewed the original MRI, which was now almost three months old, and made his decision to operate the next day. He sent us to the adjoining ER to get another CT scan and within minutes of getting the result, the room was full of nurses and doctors. Clay had a 4.5 mm twist in his brain stem and the ER staff informed us that they don't usually see that in patients that are not already in a coma. The doctor walked in and stated that someone was looking out for him and that he might have died if this was left untreated for even one more week. Clay was transferred to ICU and had surgery the next day. What followed was seven days of hell as the length of time that his brain was under pressure had caused some damage to his brain to the point where, once the pressure was released during surgery, he did not wake up for two days. He was in a coma and there was no guarantee how he would be when, or if, he woke up.
I cannot tell you how amazing the process is to watch someone start in a coma and leave the hospital eight days later with no other evidence but a wrist band, two great scars and a huge bill. It was like watching an infant that has been startled, they reach out their arms and flex, and then getting upset and wailing when they have been awakened from a nap they didn't want to end. The progression of how their dexterity and memory evolves with each hour, the ability to even hold a cup serving as the challenge of the hour. This all happened in such a short time and he is fully recovered today. The fight that he had in his heart, the willful desire to get out of the hospital and the acceptance of the severity of his condition is what pulled him through and while he doesn't have much recollection of the events, he knows it was life changing.
I cannot express enough that everyone needs to have an advocate that will stick by them and fight for their care. I see the neglect every day, the people that don't even know how great they have it and yet continue to complain about what they are missing. I see the way that patients are treated and made to feel helpless and alone when they should speak up and fight for their rights. Just because someone is a doctor does not mean that they know everything about their field. I am here to tell you that they do not. It takes teamwork and patience, speaking up when you need to be heard and never taking no for an answer when you know there are other options. Demand to be heard and share your opinions, your thoughts and ideas about what you think is going on. Read your statements when they come from the myriad of hands that have touched you. They all want their share. Lastly, you can write them and tell them how you feel about your care and demand that they write off a portion of your bill. Our original neurologist did that when I sent her a brief synopsis of what had transpired since last we were in her office. I reminded her that there was no follow up after we requested his records be transferred. Her level of care was lacking in so many departments and I suggested, rather nicely I might add, that she write off the balance. She did and I knew she would.
I guess the moral of this whole story is not only to explain my lack of attention to this site but also to share my experience so that it may help someone else someday. We live in a time where we have a plethora of information available to us and, while for many it turns them into hypochondriacs, it helps to collect information early enough that you are able to form questions to ask the doctors. Being prepared is the first step to taking care of yourself or your loved ones. When I love someone there is nothing I wouldn't do for them, especially when they are not able to do it for themselves. Be the change you want to see in the world. Isn't that what it is all about?!
I have been unable to post for so many reasons, the main reason is that shortly after my November post, my boyfriend ended up in ICU with emergency brain surgery. For months we had tried to get someone to take us seriously. We had visited Urgent Care and were sent home with a sinus infection and small pharmacy of meds that made no difference. We then visited the Emergency Room and were sent home with an ear infection and more meds that made no difference. Our doctor finally recommended us to a Neurologist as he had unexplained debilitating headaches that were rendering him unable to work. After an MRI, we found that the doctor had gone on vacation and, while she relaxed on a beach somewhere in Mexico, we were told to wait a week to get the results. I, being the bitch that I am when I am told that someone I love is in pain and the rest of the world is blind to that, flipped that switch and demanded that they have a partner look at the results and I would expect to hear back from them by the end of the day. It was amazing how easy it became to transition into that role and how I would stop at nothing to make sure we were heard. That saying came to mind, you know the one that says you don't mess with a Momma Bear's cubs?! It does not limit itself to just my cubs. My life mate was in distress and I was pissed. I was mad at the system that was put there to help you and it seemed like nobody cared that he was in pain.
We were told, that afternoon I might add, that he had fluid in his brain and the lining was unusually thick but they felt it was best to wait. Wait for what? Until he passed out from the pain? Until he couldn't walk? Until he died? They told me it was so that they could get him into Mayo Clinic so that we could get a second opinion. For those of you that are not familiar with Arizona, this is the place that the elderly flock to in the winters to avoid the cold. They plan this every year and, as a result, they make their doctor's appointments months in advance. There was no way he was going to be seen at Mayo before 2020. I started researching other doctors and ways that I might get into Mayo without having to go through that process. I found a neurologist that had just signed on with Mayo but she had her own practice. I figured this was a back door and I called them up. At this point I was shameless and when the receptionist answered, I asked her if she had five minutes to hear me out.
In the first few minutes of our visit with the new doctor, she asked us more questions than we had been asked in the three months we had been dealing with this. Dr. Travis decided that she wanted us to go to the ER and have them do a recent CT scan as well as a spinal tap. She was concerned about spinal fluid leaking and felt it was safer to be at the hospital to do it but when we arrived, as we were immediately escorted back because she had called ahead, the ER did some tests and found that it would be too dangerous to do the spinal tap. We would see a Neurosurgeon in a week and go from there.
We arrived at the neurosurgeon and were prepared for the same treatment. Our rock star doctor walked in and asked some questions. Dr. Yusupov had reviewed the original MRI, which was now almost three months old, and made his decision to operate the next day. He sent us to the adjoining ER to get another CT scan and within minutes of getting the result, the room was full of nurses and doctors. Clay had a 4.5 mm twist in his brain stem and the ER staff informed us that they don't usually see that in patients that are not already in a coma. The doctor walked in and stated that someone was looking out for him and that he might have died if this was left untreated for even one more week. Clay was transferred to ICU and had surgery the next day. What followed was seven days of hell as the length of time that his brain was under pressure had caused some damage to his brain to the point where, once the pressure was released during surgery, he did not wake up for two days. He was in a coma and there was no guarantee how he would be when, or if, he woke up.
I cannot tell you how amazing the process is to watch someone start in a coma and leave the hospital eight days later with no other evidence but a wrist band, two great scars and a huge bill. It was like watching an infant that has been startled, they reach out their arms and flex, and then getting upset and wailing when they have been awakened from a nap they didn't want to end. The progression of how their dexterity and memory evolves with each hour, the ability to even hold a cup serving as the challenge of the hour. This all happened in such a short time and he is fully recovered today. The fight that he had in his heart, the willful desire to get out of the hospital and the acceptance of the severity of his condition is what pulled him through and while he doesn't have much recollection of the events, he knows it was life changing.
I cannot express enough that everyone needs to have an advocate that will stick by them and fight for their care. I see the neglect every day, the people that don't even know how great they have it and yet continue to complain about what they are missing. I see the way that patients are treated and made to feel helpless and alone when they should speak up and fight for their rights. Just because someone is a doctor does not mean that they know everything about their field. I am here to tell you that they do not. It takes teamwork and patience, speaking up when you need to be heard and never taking no for an answer when you know there are other options. Demand to be heard and share your opinions, your thoughts and ideas about what you think is going on. Read your statements when they come from the myriad of hands that have touched you. They all want their share. Lastly, you can write them and tell them how you feel about your care and demand that they write off a portion of your bill. Our original neurologist did that when I sent her a brief synopsis of what had transpired since last we were in her office. I reminded her that there was no follow up after we requested his records be transferred. Her level of care was lacking in so many departments and I suggested, rather nicely I might add, that she write off the balance. She did and I knew she would.
I guess the moral of this whole story is not only to explain my lack of attention to this site but also to share my experience so that it may help someone else someday. We live in a time where we have a plethora of information available to us and, while for many it turns them into hypochondriacs, it helps to collect information early enough that you are able to form questions to ask the doctors. Being prepared is the first step to taking care of yourself or your loved ones. When I love someone there is nothing I wouldn't do for them, especially when they are not able to do it for themselves. Be the change you want to see in the world. Isn't that what it is all about?!
