Researching & Closure
Let's continue my story about how I got here etc. My previous post was already telling a bit where I am now, about those not so good moments and days.
But here is the real continuous for the story of how I got here, where I am now.
And I was able to travel home (from my other home) to celebrate my dad's birthday. Missing the father's day was not nice, but at least I was able to surprise him by coming home for his birthday! :) Spending time with my cat was also nice after hospitalization. ;)
But it was not easy to be at home. Much harder than I thought.
And I had too much time at home because I could not attend to any training, and mentally I was not ready to go to coach TKD classes for kids (it was just too much for me).
It was impossible to just wait with the pain, so I started to do own research.
And it was the best thing I could have done - do not get me wrong, it made me also super stressed, but I found out things I would not have known without doing the research.
You hear people saying all the time how you should not Google your symptoms, and how it just makes everything worse. I know those memes, and I know there are people who believe every word from every webpage. For those people just a quick advice: do not believe everything. For those who think that all tiny symptoms are immediately cancer - advice: please do not do any Google searches.
But sometimes you just have to Google everything. Because someday you might be in that situation, where doctors do not find anything, where they are not even willing to try to find a cause, so the thing you are trying to do, is, of course, ease your stress on your own. I hope that never happens to anyone, but it is, unfortunately, a fairly common issue.
Just do not use the chat platforms with anonymous "I know everything" people, use licensed real medical sites. For me, there is not enough information on Finnish websites, so what I did, was searching for information from English sites, such as Mayo Clinic, Healthline etc.
So I tried to get the explanation for this, never did.
I also asked her to make the referral to orthopedic and neurologist. She told me, that a neurologist does not deal with my kind of back issues. But still, she made the decision to diagnose me with nerve pain - which should always be diagnosed by a neurologist.
Does this all sound confusing? Just imagine how I felt, being uninformed about my own situation. Uninformed for 10 days.
Quick side note; This whole public health care system in Finland is just a big joke. At least for too many of those who have a chronic illness.
The other letter I got, was epicrisis report. I cannot explain the feeling I got when I was reading the first sentence; "the patient told she cannot survive without stronger pain medication." It was devastating. I was mad and even sad. Like wow, how is it possible, that I go to the hospital to find out the REASON for my pain. And all they do is give me stronger medication. And when I insist to get some examinations done and see specialists etc, they do not do anything. And at the end, I am the one who is asking for more stronger meds?! I do not get it.
-- I guess there is no need to explain more why I am still thinking about sending the complaint to that hospital.
Again, I have not made a better decision than traveling all the way there.
It was the first time after the doctor in Singapore when someone took me seriously. When a medical professional did not take me as an overreacting person, did not just give me more meds and asked to come back if those will not help.
Actually, he told me to stop using the meds I was using, because it was super important that I would first go to nerve tests, before diagnosing me with nerve pain.
He made the referral to the neurologist, the referral which the hospital should have made already when I was there.
He told me to send the results to him, and also send the results from my latest MRI. Because at that time I did not yet have the results.
And he talked with me, and my mom for almost 2 hours. The longest time any doctor has talked with me.
He made sure, that I understood everything, and that I felt I was taken care of.
And he even called me an evening before Christmas to tell the results from EMG and what he discovered from my MRI.
All clear. No wonder, that the nerve pain meds did not help, as it was wrongly diagnosed.
My next step was waiting for 3 months without any training, and if still having pain in normal life, would flexion extension X-ray be the next one.
3 months would be enough to see how the pain changes, if it change.
Meaning, that if my pain would have stopped, it would have been a clear sign, that the reason for my pain would have been my sports.
But if it would have continued (as it did), it would have been mean, that my sports are not the reason, and it could be something else. What MRI did not show.
I had work interviews, and I was very close to getting my dream job (what I actually later got, but I declined it and came to Australia instead). All those 5 months I had pain, it was still there, all the time.
So why did I not call earlier to my doctor?
I was afraid.
At the time I realized, that I have to call, I already had my flight tickets to Brisbane. I was afraid to call, because first time ever, I did not want to hear what he had to say.
My biggest fear was also my biggest hope.
I had a fear, that something would have been found, something that could have been medically cured. Something that would have been the reason to cancel my trip.
At the same time, I had the hope, that something would have been found. Something that could have been medically cured.
But I had the X-ray done.
And again, I was in the starting point.
It was clear.
I was not happy. I could not be. Not at that moment.
I still had pain, and there were all the tests done, and nothing found.
How could I be happy? Happy, because there was not anything to do for the pain.
I just did not find the happiness in that.
In fact, for me, it was the breaking point.
The moment which broke me mentally.
And at the same time, it was the moment which made me decide, that my life will change when I get away from home. I needed the change, and it is the weirdest feeling ever. To realize, that you need to get somewhere, where you do not know anyone, and no one knows you. It is the moment, that you realize, that is the only way things can change. To just start over, turn a totally new page in the life. Leave everything behind, and just go.
But what did the central hospital in Finland leave out from my MRI results?
What is causing the pain? The radiating pain and discomfort?
What is the issue, which is causing me so much trouble, but is too small from a medical point of view?
It is the one herniated disc.
The one which "slightly in some movements, in some exercises might tickle the nerves, and cause pain and discomfort." - the almost direct citation from what my doctor said.
That one plus the others are the cause of my pain.
What about the EMG test? Why it did not show anything?
As my doctor said because it should have been taken within 3 months from the first MRI.
In my case, it was maybe already too late. The damage might be there already, but it does not show anything in any tests, because my nerves are already used to it. So nerve test is not showing anything, because it only shows what the nerves are not used to experience.
It can break down, or it can make stronger.
It is not easy to hold on to that hope, the hope, that someday my chronic pain is gone. Because it is not something that will probably happen. Most likely, my pain will stay. But there is that hope, that hopes it will get to the level of 0-3 (the unicorn level), and would actually stay there. Or at least would stay all the time in number 4.
The story of how everything started, how everything went from zero back on track, and again to zero, and finally finding the one good doctor is here. Written for 3 different stories, in a simple way, telling the main points from the last 17 months. For me, the time went super slow, but also in some ways it went fast. It is amazing where own body is capable, it is capable of ignoring the pain and making it worse, it is capable of getting used to the pain, and that what happened to me. I cannot say that I would be super comfortable with the pain now, I am not. But somehow I am used to it. It is part of my life, and I just have to get used to living with it. It is the only way to continue my life.
But the story does not end here, there is more to come. About my current situation, my rehabilitation, my workouts... And in general, my life nowadays! :)
But here is the real continuous for the story of how I got here, where I am now.
Too much time
After my hospitalization in November, I thought that the worst is over. In some way, yes it was, because I was out from the hospital - which was already one step closer to recovery.And I was able to travel home (from my other home) to celebrate my dad's birthday. Missing the father's day was not nice, but at least I was able to surprise him by coming home for his birthday! :) Spending time with my cat was also nice after hospitalization. ;)
But it was not easy to be at home. Much harder than I thought.
And I had too much time at home because I could not attend to any training, and mentally I was not ready to go to coach TKD classes for kids (it was just too much for me).
It was impossible to just wait with the pain, so I started to do own research.
And it was the best thing I could have done - do not get me wrong, it made me also super stressed, but I found out things I would not have known without doing the research.
You hear people saying all the time how you should not Google your symptoms, and how it just makes everything worse. I know those memes, and I know there are people who believe every word from every webpage. For those people just a quick advice: do not believe everything. For those who think that all tiny symptoms are immediately cancer - advice: please do not do any Google searches.
But sometimes you just have to Google everything. Because someday you might be in that situation, where doctors do not find anything, where they are not even willing to try to find a cause, so the thing you are trying to do, is, of course, ease your stress on your own. I hope that never happens to anyone, but it is, unfortunately, a fairly common issue.
Just do not use the chat platforms with anonymous "I know everything" people, use licensed real medical sites. For me, there is not enough information on Finnish websites, so what I did, was searching for information from English sites, such as Mayo Clinic, Healthline etc.
Confusion after confusion
During my hospitalization, I asked several times from the doctor if she can show my MRI results, and explain them to me. The reason was, that I had the written results from MRI, saying that the findings do not match with my pain level. In the other hand, this doctor kept saying "reason for your pain is the things found from MRI." A little confusing, right?So I tried to get the explanation for this, never did.
I also asked her to make the referral to orthopedic and neurologist. She told me, that a neurologist does not deal with my kind of back issues. But still, she made the decision to diagnose me with nerve pain - which should always be diagnosed by a neurologist.
Does this all sound confusing? Just imagine how I felt, being uninformed about my own situation. Uninformed for 10 days.
Letters which made me mad
A month later I got a letter by post, saying, that the hospital declined my referral to orthopedics. Which is hilarious. Someone who has never seen me in person, decides, that there is no need to see orthopedic. Based on what? The referral was made by the doctor in the hospital, who saw me every freaking day during those 10 days. But still, someone who has never seen me, decide there is no need to see a specialist.Quick side note; This whole public health care system in Finland is just a big joke. At least for too many of those who have a chronic illness.
The other letter I got, was epicrisis report. I cannot explain the feeling I got when I was reading the first sentence; "the patient told she cannot survive without stronger pain medication." It was devastating. I was mad and even sad. Like wow, how is it possible, that I go to the hospital to find out the REASON for my pain. And all they do is give me stronger medication. And when I insist to get some examinations done and see specialists etc, they do not do anything. And at the end, I am the one who is asking for more stronger meds?! I do not get it.
 |
| You think I wanted to take all these meds? No, I did not. But the hospital gave it to me. |
-- I guess there is no need to explain more why I am still thinking about sending the complaint to that hospital.
500km travel to see a doctor
Thanks to my mom, a just few weeks after my hospitalization, we found a good doctor. And I traveled all the way from home to there. Calculated based on Google Maps, because my route was not that simple, first by train and then by a car.Again, I have not made a better decision than traveling all the way there.
It was the first time after the doctor in Singapore when someone took me seriously. When a medical professional did not take me as an overreacting person, did not just give me more meds and asked to come back if those will not help.
Actually, he told me to stop using the meds I was using, because it was super important that I would first go to nerve tests, before diagnosing me with nerve pain.
He made the referral to the neurologist, the referral which the hospital should have made already when I was there.
He told me to send the results to him, and also send the results from my latest MRI. Because at that time I did not yet have the results.
And he talked with me, and my mom for almost 2 hours. The longest time any doctor has talked with me.
He made sure, that I understood everything, and that I felt I was taken care of.
And he even called me an evening before Christmas to tell the results from EMG and what he discovered from my MRI.
Tests after tests
My first test was EMG, nerve tests.All clear. No wonder, that the nerve pain meds did not help, as it was wrongly diagnosed.
My next step was waiting for 3 months without any training, and if still having pain in normal life, would flexion extension X-ray be the next one.
3 months would be enough to see how the pain changes, if it change.
Meaning, that if my pain would have stopped, it would have been a clear sign, that the reason for my pain would have been my sports.
But if it would have continued (as it did), it would have been mean, that my sports are not the reason, and it could be something else. What MRI did not show.
Life happens
I am continuously telling this, that sometimes life happens. Suddenly 3 months turned to 5 months.I had work interviews, and I was very close to getting my dream job (what I actually later got, but I declined it and came to Australia instead). All those 5 months I had pain, it was still there, all the time.
So why did I not call earlier to my doctor?
I was afraid.
At the time I realized, that I have to call, I already had my flight tickets to Brisbane. I was afraid to call, because first time ever, I did not want to hear what he had to say.
My biggest fear was also my biggest hope.
I had a fear, that something would have been found, something that could have been medically cured. Something that would have been the reason to cancel my trip.
At the same time, I had the hope, that something would have been found. Something that could have been medically cured.
But I had the X-ray done.
And again, I was in the starting point.
It was clear.
Happy or not?
I heard people around me telling how wonderful it is, that nothing was found.I was not happy. I could not be. Not at that moment.
I still had pain, and there were all the tests done, and nothing found.
How could I be happy? Happy, because there was not anything to do for the pain.
I just did not find the happiness in that.
In fact, for me, it was the breaking point.
The moment which broke me mentally.
And at the same time, it was the moment which made me decide, that my life will change when I get away from home. I needed the change, and it is the weirdest feeling ever. To realize, that you need to get somewhere, where you do not know anyone, and no one knows you. It is the moment, that you realize, that is the only way things can change. To just start over, turn a totally new page in the life. Leave everything behind, and just go.
My final diagnosis?
So what is the final diagnosis? From MRI it shows two small herniated discs, little degeneration, and tear injury. All between L4-L5. That has basically been the same since my first back MRI in Singapore.But what did the central hospital in Finland leave out from my MRI results?
What is causing the pain? The radiating pain and discomfort?
What is the issue, which is causing me so much trouble, but is too small from a medical point of view?
It is the one herniated disc.
The one which "slightly in some movements, in some exercises might tickle the nerves, and cause pain and discomfort." - the almost direct citation from what my doctor said.
That one plus the others are the cause of my pain.
What about the EMG test? Why it did not show anything?
As my doctor said because it should have been taken within 3 months from the first MRI.
In my case, it was maybe already too late. The damage might be there already, but it does not show anything in any tests, because my nerves are already used to it. So nerve test is not showing anything, because it only shows what the nerves are not used to experience.
"In the medical point of view, there is nothing I can do. Nothing else, than just hope."
But I can say, that when a doctor says like that, it gets a whole new meaning.It can break down, or it can make stronger.
It is not easy to hold on to that hope, the hope, that someday my chronic pain is gone. Because it is not something that will probably happen. Most likely, my pain will stay. But there is that hope, that hopes it will get to the level of 0-3 (the unicorn level), and would actually stay there. Or at least would stay all the time in number 4.
The story of how everything started, how everything went from zero back on track, and again to zero, and finally finding the one good doctor is here. Written for 3 different stories, in a simple way, telling the main points from the last 17 months. For me, the time went super slow, but also in some ways it went fast. It is amazing where own body is capable, it is capable of ignoring the pain and making it worse, it is capable of getting used to the pain, and that what happened to me. I cannot say that I would be super comfortable with the pain now, I am not. But somehow I am used to it. It is part of my life, and I just have to get used to living with it. It is the only way to continue my life.
But the story does not end here, there is more to come. About my current situation, my rehabilitation, my workouts... And in general, my life nowadays! :)
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