The wait
The last few weeks have been extremely challenging to say the least. The weather has certainly added to my pain, IL has been rainy off and on but really rainy for the past couple of days. This has been explained to me as the change in atmospheric pressure putting more pressure on our bodies. So thank you mother nature for creating a nightmare in my body. There have been some stressful family situations which also add to the pain (real life cannot be avoided).
The biggest thing was having a visit with my pain management doctor. I left there feeling defeated but later realized that it was for the best. The initial assessment was that it is time to see the nuerosurgeon, which most definitely frightens me. I have to face reality and understand that my neck is in such a bad state that surgery will probably be imminent. I was not as afraid the first time around. Sure I was scared, who isn't scared of surgery? Who wouldn't have fear when hearing that the front of your neck will be cut open, the same area that holds the esophagus, your jugular, trachea, carotid artery and more. This time is different though. This time I know they will have to remove the existing metal plate and screws and that scares me the most. How much longer will I be in surgery? How many more risks will there be? I will ask these questions but until I see the Nuero surgeon in a month, this will haunt me.
There also came a point when my doctor, who is incredible by the way, did a physical exam of my legs. When he finished he immediately turned to the nurse and said, "We need to order an MRI of her lumbar spine."
I am aware of this disease being able to travel to any place in the spine. My grandmother and mother both have it in their cervical and lumbar spine. I suppose I had hoped I had more years before this became a possibility. Maybe there is nothing wrong, that would be amazing, but again, I have to wait to see.
When making my MRI appointment I was hit with more. I knew that they were ordering nerve tests (EMG) on all four limbs, that was no surprise. I knew that an MRI on my brain was a possibility as they have been discussing the possible presence of MS for years now. I did not know I would be told I needed an MRI with and without contrast on my brain and an MRA (angiogram) on my brain. I wish that doctors would tell you what they are looking for before you Google things. Again, more waiting.
If you are a person who deals with anything chronic, life often becomes a game of waiting around. Waiting for tests, waiting for results, waiting for appointments, waiting for treatment and there is a lot of waiting for a good day. I have always been an instant gratification type of person. I want the answers yesterday not trickling in over the next month. I have to constantly remind myself that all of this is good. It is all positive. They are finally getting tests done that have been on the back burner for literally a couple of years. That is not an easy thing to remember. It is not easy to wonder why these things are happening to you and having few explanations for it.
I have to thank and be grateful for my pain management doctor. He truly has been my biggest advocate medically. He explains things in great detail and shows us (myself and my significant other) exactly what he sees in the MRIs. He has tried his best to keep me out of surgery and really wants to figure out why my spine issues are progressing faster than the majority of people living with the same. He will be doing more injections in hopes of easing some of my arm and hand symptoms while I wait for all the results to start rolling in.
I wanted to share this part of my journey not for sympathy or attention, in fact I don't want any of that. I don't want to hear the, ' I'm sorry,' responses, because there is nothing for anyone to be sorry for. Nobody did this to me, it is just the path God decided for me. I am sharing this because I truly want people to understand how overwhelming and scary it can be. I want people to know how much waiting chronic patients do. When you ask us what is wrong with us, we can't always tell you. When you want answers to help ease your doubts, we want them to ease our fears. There is nothing easy about the journey we are on, not for the patient or for the people who love them and are waiting for the answers too. The best thing you can do is be patient with us, understand that we are dealing with as much mentally as we are physically, know that sometimes our bad days are not physically bad, but emotionally crushing days. The last and most important piece of wisdom I can give is this, do not question or doubt us! Doctors won't order these expensive tests without good reason and the insurance companies most certainly won't pay for them. Remember that when you are sitting around questioning our sincerity.
I don't want to live this way. I don't want to be in this body. None of us want to be this way or live this way. We have no choice, but the people around us have a choice about how they treat us and speak about us.
The biggest thing was having a visit with my pain management doctor. I left there feeling defeated but later realized that it was for the best. The initial assessment was that it is time to see the nuerosurgeon, which most definitely frightens me. I have to face reality and understand that my neck is in such a bad state that surgery will probably be imminent. I was not as afraid the first time around. Sure I was scared, who isn't scared of surgery? Who wouldn't have fear when hearing that the front of your neck will be cut open, the same area that holds the esophagus, your jugular, trachea, carotid artery and more. This time is different though. This time I know they will have to remove the existing metal plate and screws and that scares me the most. How much longer will I be in surgery? How many more risks will there be? I will ask these questions but until I see the Nuero surgeon in a month, this will haunt me.
There also came a point when my doctor, who is incredible by the way, did a physical exam of my legs. When he finished he immediately turned to the nurse and said, "We need to order an MRI of her lumbar spine."
I am aware of this disease being able to travel to any place in the spine. My grandmother and mother both have it in their cervical and lumbar spine. I suppose I had hoped I had more years before this became a possibility. Maybe there is nothing wrong, that would be amazing, but again, I have to wait to see.
When making my MRI appointment I was hit with more. I knew that they were ordering nerve tests (EMG) on all four limbs, that was no surprise. I knew that an MRI on my brain was a possibility as they have been discussing the possible presence of MS for years now. I did not know I would be told I needed an MRI with and without contrast on my brain and an MRA (angiogram) on my brain. I wish that doctors would tell you what they are looking for before you Google things. Again, more waiting.
If you are a person who deals with anything chronic, life often becomes a game of waiting around. Waiting for tests, waiting for results, waiting for appointments, waiting for treatment and there is a lot of waiting for a good day. I have always been an instant gratification type of person. I want the answers yesterday not trickling in over the next month. I have to constantly remind myself that all of this is good. It is all positive. They are finally getting tests done that have been on the back burner for literally a couple of years. That is not an easy thing to remember. It is not easy to wonder why these things are happening to you and having few explanations for it.
I have to thank and be grateful for my pain management doctor. He truly has been my biggest advocate medically. He explains things in great detail and shows us (myself and my significant other) exactly what he sees in the MRIs. He has tried his best to keep me out of surgery and really wants to figure out why my spine issues are progressing faster than the majority of people living with the same. He will be doing more injections in hopes of easing some of my arm and hand symptoms while I wait for all the results to start rolling in.
I wanted to share this part of my journey not for sympathy or attention, in fact I don't want any of that. I don't want to hear the, ' I'm sorry,' responses, because there is nothing for anyone to be sorry for. Nobody did this to me, it is just the path God decided for me. I am sharing this because I truly want people to understand how overwhelming and scary it can be. I want people to know how much waiting chronic patients do. When you ask us what is wrong with us, we can't always tell you. When you want answers to help ease your doubts, we want them to ease our fears. There is nothing easy about the journey we are on, not for the patient or for the people who love them and are waiting for the answers too. The best thing you can do is be patient with us, understand that we are dealing with as much mentally as we are physically, know that sometimes our bad days are not physically bad, but emotionally crushing days. The last and most important piece of wisdom I can give is this, do not question or doubt us! Doctors won't order these expensive tests without good reason and the insurance companies most certainly won't pay for them. Remember that when you are sitting around questioning our sincerity.
I don't want to live this way. I don't want to be in this body. None of us want to be this way or live this way. We have no choice, but the people around us have a choice about how they treat us and speak about us.
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