I used to say I am... so, now what? (Don't care, I'm happy!!)
Gosh.... Dunno even from where to start...!! (I am actually shaking!!) Sorry, this will be a bit long...
21 years..., 21 LOOOOOOOOOOOONG years, and yet.... it still feels like yesterday...
21 years ago (12yo then... year was 1996) I was diagnosed with diabetes type 1 (aka juvenile, insulin dependant, "the worst/bad kind" 😂); and I still remember very clearly everything before, during and after the diagnosis, from months of not knowing what was wrong, having finally a diagnosis - which by the way was given on December 18th -, how afraid I was to go for the first time in my life to the hospital of the IV - got out Dec. 24th - , and my mom ever so after that saying/asking: "you can't eat that", "have you taken you're glucose?", "have you eaten?", "have you put you're insulin?", "how did it get that low/high?"; some how one way or another... there wasn't a year I was hospital free...
Then complication came... 4 eye surgeries (2 in each eye), and dialysis... now THEN is when things got really ugly.... I went from being a "healthy" diabetic to the point I almost died...
Dec. 2015 - Jan. 2016 - During those days I started to retain a lot of liquid regardless of dialysis and loads of diuretics... at some point wasn't able to continue working, as my ability to walk started to deteriorate... by August that year I had lost 15kg of muscle and gained the same amount in fluid, I was with oxygen, motionless (literally I was on a wheel chair), BP always rocket high, was not able to eat much, with an intake of over 30 different meds a day!... practically I felt like a potato laying in bed all the time... and still no insights for me going on a transplant list (only kidney and privately costs over 500,000USD in Mexico, I wasn't able to get insurance... not even from the state),
My dad by then said enough is enough, and flew me back to Finland (1st thing I am grateful for!).
The flight took what felt like forever and practically as soon as I arrived to Helsinki, and sort of kind of settling in, I went to the hospital. I was so surprised to everything the doctors told me here:
- I have had insufficient dialysis (1/w vs 3/w)
- I had Salmonella
- My heart was about to give up if I would have stayed back in Mexico
- I was taking a bunch of medicines I didn't even need to...
- I was having the wrong diet: low protein high potassium and phosphorus, when is pretty much the other way around!
...and that's just to name a few... but was enough for me not ever wanting to go back (yes I felt like so at the time, now I just want to go for holidays).
After, everything started to go better: I started physiotherapy and eventually left the wheel chair, broke my right foot in the process, gained the lost weight, got rid of salmonella, haven't been able to go back to work, but I've managed to take couple courses, finally got the fistula for dialysis, and after MANY MANY tests I got into the transplant list on April 30th, 2017... obviously, being in Finland, I was not only waiting for a kidney, but a pancreas was well! (2nd thing to be grateful). Obviously, it wouldn't be me if I didn't go to the hospital again during 2017 😅
I have to say... once you have a chronic, degenerative disease, it turns out to be more than that... it becomes a lifestyle; of course, your life depends on you doing everything as well as you can. And every time time when I said "I'm a diabetic" or "I have diabetes" or "sorry I can't because I have/am in dialysis" people look at you to say the famous and certainly hated I AM SO SORRY! Because the first thing about this is that you don't want to feel like if you were less or imperfect, or pitied, or strange. All you want is to feel normal, and be able to do normal things, but how can you? when you have a constant daily remainder of it. And then there are those that say "oh, really?, but you don't look sick!" REALLY?!?!?! do they expect for people to have a brand in the middle of their foreheads?? That is definitely not the image I want to give, the one of a sick person....!!! And lastly are those that say: "you are SO brave! I do not know how you manage!" WHAT?!?!? It's EASY, just learn that if you do not do it, you die... that simple, no bravery involved!! why would being diabetic or in dialysis make me brave??
Anyway, a bit more than a month ago (Feb.12th), I got THE phone call!!! I had to go to the hospital AS SOON AS POSSIBLE!! The dream that I always felt somehow impossible and soooooo not even remotely close, finally came true! I got the final tests on the 12th, surgery on the 13th and back to the ward on the 14th! (Best Valentines EVER!!!!!). Now I can say I USED TO HAVE DIABETES AND CKD (chronic kidney disease)
After being for only two weeks in the hospital, and two weeks at home, I had to run back again to the hospital for a second surgery.... this time my bowel was choking and had to free it!
Doctors said to me that I have been lucky twice! First because the transplant was a PERFECT match for me, and second, because they caught the choking thing in an early stage!
Of course after EVERYTHING that has happened, and realising that what I got, is much more than a transplant... lots of emotions and thoughts came to my mind...
Ok.. I will have to start enumerating here... its quite a list... but they didn't come necessarily in the given order:
1. I am grateful for my parents! They are not perfect, but nonetheless have supported me and been by my side during this whole process. (and I know I complain many times about mom and being overprotective, but I do understand and still im grateful for that!)
2. I am grateful to all the people that have been a part of my story! To those that have past and the ones that have stayed. Because all of you have thought me something, have made me want to keep going on, to have hope, and most importantly, im am grateful with all of you who have kept up with me and all this tough battle and surgery, because when it has been the most scary and difficult time, you have demonstrated me that I am not, never have and never will be alone!
3. I am sorry and grateful to the donor and his/her family! (this is a difficult point... and the reason why I said earlier I am shaking). Even though I will never get to know them... they have nothing but my admiration: they ARE THE TRUE BRAVE ONES. For starters, I don't think that being a donor or having to decide to make organ donations is an easy decision, and yet, this family did. Second, from this donation... I was not the only one who got an organ.... many other people got to live a fuller, better life because of it! Nothing but proudness there!
4. (Related to the previous point) I am sorry that this person had to die for me to be so lucky... somehow you start to wonder what have you done to be honoured in such a way... am I really that good of a person? Something I must be doing right...!
5. I feel strange...what used to be a lifestyle, it no longer is... I still keep reaching for my glucometer or searching for my insulin, or wonder if I have dialysis the next day... Is like I gained and lost something at the same time, even though I am aware that I have gained much more than what I've lost.
6. I am sad... I wished that my cousin and my grandparents were still alive to share this joy with me, to actually see me healthy and stronger than ever, and see them smile when I told them, to hug them, or to just listen to their voices. I miss them with all my heart. 💕😢
7. I am thankful for my past. Everything that has happened to me, the good, the bad, the pretty, the ugly, the hospitals, the trips, the injections, the surgeries, the falls, the success, the tears, the laughter, the fear... everything has showed me that I can, that there are no impossibles, that as long as I persevere I will make it through. It showed me how strong I am, it has made me who I am!
8. Lastly, I feel... dunno if called it confused? aware? curious?...
I had a long life labeled as ill, with so many limitations and weaknesses (in the literal way... you feel tired and weak ALL THE TIME), and now, is like a new door with a whole new bunch of opportunities has opened just in front of me... and I just want to jump in and take all than I can at the same time... and there is SO much, that I feel kind of lost... like I didn't know who I was or what I wanted anymore... because the options are endless and the range of opportunities is so vast. And coupled with that, I now feel like a part of something, that now I deserve, that now I am someone I never was.
I've been told to take a step at a time, but when you feel that you just woke up from 21 years of sleep, its a whole brave new world out there..
I know I'll eventually figure everything out... but in the mean time all I can say is THANK YOU! Thank you family, thank you friends! Thank you to the donor and the doctors who have treated me! and mostly thank you life for this new chance!
21 years..., 21 LOOOOOOOOOOOONG years, and yet.... it still feels like yesterday...
21 years ago (12yo then... year was 1996) I was diagnosed with diabetes type 1 (aka juvenile, insulin dependant, "the worst/bad kind" 😂); and I still remember very clearly everything before, during and after the diagnosis, from months of not knowing what was wrong, having finally a diagnosis - which by the way was given on December 18th -, how afraid I was to go for the first time in my life to the hospital of the IV - got out Dec. 24th - , and my mom ever so after that saying/asking: "you can't eat that", "have you taken you're glucose?", "have you eaten?", "have you put you're insulin?", "how did it get that low/high?"; some how one way or another... there wasn't a year I was hospital free...
Then complication came... 4 eye surgeries (2 in each eye), and dialysis... now THEN is when things got really ugly.... I went from being a "healthy" diabetic to the point I almost died...
Dec. 2015 - Jan. 2016 - During those days I started to retain a lot of liquid regardless of dialysis and loads of diuretics... at some point wasn't able to continue working, as my ability to walk started to deteriorate... by August that year I had lost 15kg of muscle and gained the same amount in fluid, I was with oxygen, motionless (literally I was on a wheel chair), BP always rocket high, was not able to eat much, with an intake of over 30 different meds a day!... practically I felt like a potato laying in bed all the time... and still no insights for me going on a transplant list (only kidney and privately costs over 500,000USD in Mexico, I wasn't able to get insurance... not even from the state),
My dad by then said enough is enough, and flew me back to Finland (1st thing I am grateful for!).
The flight took what felt like forever and practically as soon as I arrived to Helsinki, and sort of kind of settling in, I went to the hospital. I was so surprised to everything the doctors told me here:
- I have had insufficient dialysis (1/w vs 3/w)
- I had Salmonella
- My heart was about to give up if I would have stayed back in Mexico
- I was taking a bunch of medicines I didn't even need to...
- I was having the wrong diet: low protein high potassium and phosphorus, when is pretty much the other way around!
...and that's just to name a few... but was enough for me not ever wanting to go back (yes I felt like so at the time, now I just want to go for holidays).
After, everything started to go better: I started physiotherapy and eventually left the wheel chair, broke my right foot in the process, gained the lost weight, got rid of salmonella, haven't been able to go back to work, but I've managed to take couple courses, finally got the fistula for dialysis, and after MANY MANY tests I got into the transplant list on April 30th, 2017... obviously, being in Finland, I was not only waiting for a kidney, but a pancreas was well! (2nd thing to be grateful). Obviously, it wouldn't be me if I didn't go to the hospital again during 2017 😅
I have to say... once you have a chronic, degenerative disease, it turns out to be more than that... it becomes a lifestyle; of course, your life depends on you doing everything as well as you can. And every time time when I said "I'm a diabetic" or "I have diabetes" or "sorry I can't because I have/am in dialysis" people look at you to say the famous and certainly hated I AM SO SORRY! Because the first thing about this is that you don't want to feel like if you were less or imperfect, or pitied, or strange. All you want is to feel normal, and be able to do normal things, but how can you? when you have a constant daily remainder of it. And then there are those that say "oh, really?, but you don't look sick!" REALLY?!?!?! do they expect for people to have a brand in the middle of their foreheads?? That is definitely not the image I want to give, the one of a sick person....!!! And lastly are those that say: "you are SO brave! I do not know how you manage!" WHAT?!?!? It's EASY, just learn that if you do not do it, you die... that simple, no bravery involved!! why would being diabetic or in dialysis make me brave??
Anyway, a bit more than a month ago (Feb.12th), I got THE phone call!!! I had to go to the hospital AS SOON AS POSSIBLE!! The dream that I always felt somehow impossible and soooooo not even remotely close, finally came true! I got the final tests on the 12th, surgery on the 13th and back to the ward on the 14th! (Best Valentines EVER!!!!!). Now I can say I USED TO HAVE DIABETES AND CKD (chronic kidney disease)
After being for only two weeks in the hospital, and two weeks at home, I had to run back again to the hospital for a second surgery.... this time my bowel was choking and had to free it!
Doctors said to me that I have been lucky twice! First because the transplant was a PERFECT match for me, and second, because they caught the choking thing in an early stage!
Of course after EVERYTHING that has happened, and realising that what I got, is much more than a transplant... lots of emotions and thoughts came to my mind...
Ok.. I will have to start enumerating here... its quite a list... but they didn't come necessarily in the given order:
1. I am grateful for my parents! They are not perfect, but nonetheless have supported me and been by my side during this whole process. (and I know I complain many times about mom and being overprotective, but I do understand and still im grateful for that!)
2. I am grateful to all the people that have been a part of my story! To those that have past and the ones that have stayed. Because all of you have thought me something, have made me want to keep going on, to have hope, and most importantly, im am grateful with all of you who have kept up with me and all this tough battle and surgery, because when it has been the most scary and difficult time, you have demonstrated me that I am not, never have and never will be alone!
3. I am sorry and grateful to the donor and his/her family! (this is a difficult point... and the reason why I said earlier I am shaking). Even though I will never get to know them... they have nothing but my admiration: they ARE THE TRUE BRAVE ONES. For starters, I don't think that being a donor or having to decide to make organ donations is an easy decision, and yet, this family did. Second, from this donation... I was not the only one who got an organ.... many other people got to live a fuller, better life because of it! Nothing but proudness there!
4. (Related to the previous point) I am sorry that this person had to die for me to be so lucky... somehow you start to wonder what have you done to be honoured in such a way... am I really that good of a person? Something I must be doing right...!
5. I feel strange...what used to be a lifestyle, it no longer is... I still keep reaching for my glucometer or searching for my insulin, or wonder if I have dialysis the next day... Is like I gained and lost something at the same time, even though I am aware that I have gained much more than what I've lost.
6. I am sad... I wished that my cousin and my grandparents were still alive to share this joy with me, to actually see me healthy and stronger than ever, and see them smile when I told them, to hug them, or to just listen to their voices. I miss them with all my heart. 💕😢
7. I am thankful for my past. Everything that has happened to me, the good, the bad, the pretty, the ugly, the hospitals, the trips, the injections, the surgeries, the falls, the success, the tears, the laughter, the fear... everything has showed me that I can, that there are no impossibles, that as long as I persevere I will make it through. It showed me how strong I am, it has made me who I am!
8. Lastly, I feel... dunno if called it confused? aware? curious?...
I had a long life labeled as ill, with so many limitations and weaknesses (in the literal way... you feel tired and weak ALL THE TIME), and now, is like a new door with a whole new bunch of opportunities has opened just in front of me... and I just want to jump in and take all than I can at the same time... and there is SO much, that I feel kind of lost... like I didn't know who I was or what I wanted anymore... because the options are endless and the range of opportunities is so vast. And coupled with that, I now feel like a part of something, that now I deserve, that now I am someone I never was.
I've been told to take a step at a time, but when you feel that you just woke up from 21 years of sleep, its a whole brave new world out there..
I know I'll eventually figure everything out... but in the mean time all I can say is THANK YOU! Thank you family, thank you friends! Thank you to the donor and the doctors who have treated me! and mostly thank you life for this new chance!
Comments
Post a Comment
All thoughts and comments are welcome!
Todos los comentarios y pensamientos al respecto son bienvenidos!