So, I have been missing do to the many life changing decisions. Initially I decided to go back to school for nursing but as a mother of two Thal children and watching other families with chronically transfused children not knowing or understanding the importance of a low-iron diet for their children has made me reconsider my career decision. Though I still haven't made my final decision between going into Bio-engineering and wanting to be there when the cure is available or nutrition for chronically transfused patients. Either way I will still fight for more information is available for hemo patients.
There is just not enough information available to patients and their families. Doctors do not emphasize the long term benefits of living on a low-iron diet, but also the immediate effects if they are not careful. Granted I am aware that there are laws that can prevent them from saying anything, but also there hasn't been enough focus on that subject. Luckily a nutritionist Dr. Ellen Fung from the Children's Hospital in Oakland has done a study of the importance of nutrition for Thalassemia patients and is now working on a study how to prevent or prolong the presence of osteoporosis in Thalassemia patients. Through her efforts in her conferences with Cooley's Anemia Foundation is great, but doctors need to get on board with passing on that information to their patients.
Though I love my kids doctor I was quite upset when the subject of nutrition was brought up and he felt there was no immediate need to focus on that, but he did agree it is a long term benefit. While in school this semester I was required to watch the movie "Super size Me" a documentary by Michael Spurlock. Michael was very healthy in the beginning of the documentary and he ate McDonald's 3 meals a day for 30 days by the end he was at risks for many diseases. An individual who should be on a low iron diet and yet is unaware of that, may over eat items that are bad for their condition and can have present results that can be fatal. There does need to be more studies and education available. As a diabetic needs to stay clear of a certain amount of carbohydrates, as should a chronic blood transfused person should know their limit of rich iron foods. Doesn't mean they cannot eat anything that is rich in iron but to know how to manage their diet. With my two children I have been teaching them to eat healthy home made foods and the benefits of eating at home, but also how to make better choices when they are faced with eating out. Which items are low iron and how to substitute and still feel they ate well without hurting themselves. If every parent was taught these aspects when they found out their child is chronically anemic and taught them from a young age, when they become adults they would have better chances of living longer lives. Eating well, benefits all people, but when a a disorder is present there should education available of the benefits.
If you want more information about foods to limit please contact me.
Sunday, December 2, 2012
Tuesday, February 21, 2012
Sorry it has been a while
Monday, January 9, 2012
How the stress can hurt you in your life
When I first found out that Dimitri had to start blood transfusions the stress was unbearable that Cristian and I got divorced because it made our issues bigger. After months to figure things out we decided to get back together and make things work.
We did such or so I thought…
We bought a house, Cristian got a job out-of-state. In this time I found out that Angelina also had to start BT, and it was that roller coaster ride again. The emotional stress and trying to pull myself out of the self-pity. Needing the emotional support. Cristian decided to come back home to support the family.
We started a business even if slow I felt Cristian’s support at home with the kids and how everyone’s relationship grew stronger. In this time our business is not moving forward and not making any money, so I am financially supporting our family, and depended on Cristian’s help with the kids, since he was un-willing to find a second job. The stress of knowing that our gas will be shut off and if we will have enough to buy food until the next pay check. Watching my debt get deeper and deeper. My stress is so much that I began to become numb.
Financially we can never afford to go out or have some adult time. So the tension builds as well. I start putting on weight, and everything is too much to handle, so I decide to start working out and eating healthy in hopes to create self-worth again for myself, but also entice my relationship.
Results were that I have lost my personality, and I don’t put any effort into our family. A bit of jealousy that I allowed my kids to talk to their dad who in reality I feel it was premature as well. Their father has taken no responsibility or has shown any interest in their health situation. I stopped all communication and visitation and he recently decided to take an interest. Truth be told Cristian has been there for most BT for both kids and has been Dimitri’s male figure and father figure and here their dad wants to jump in and take his title back that he didn’t earn.
Right when I thought I was on the right track to find inner happiness again, I got knocked down from my feet. I know it has taken toll of my emotions I hear it at work as well. My family was all I had left on my side and now I feel that was torn apart.
I am so tired of the emotional tool and stress and now the only relationship that ever mattered to me, may end because I am numb but at the same time what more could I have done when I took over everything? I feel so lost and drained and that I have done all I can. I feel as if I have lost myself because not any loads have been taken off my back. Yet it is my entire fault.
I am so tired….
We did such or so I thought…
We bought a house, Cristian got a job out-of-state. In this time I found out that Angelina also had to start BT, and it was that roller coaster ride again. The emotional stress and trying to pull myself out of the self-pity. Needing the emotional support. Cristian decided to come back home to support the family.
We started a business even if slow I felt Cristian’s support at home with the kids and how everyone’s relationship grew stronger. In this time our business is not moving forward and not making any money, so I am financially supporting our family, and depended on Cristian’s help with the kids, since he was un-willing to find a second job. The stress of knowing that our gas will be shut off and if we will have enough to buy food until the next pay check. Watching my debt get deeper and deeper. My stress is so much that I began to become numb.
Financially we can never afford to go out or have some adult time. So the tension builds as well. I start putting on weight, and everything is too much to handle, so I decide to start working out and eating healthy in hopes to create self-worth again for myself, but also entice my relationship.
Results were that I have lost my personality, and I don’t put any effort into our family. A bit of jealousy that I allowed my kids to talk to their dad who in reality I feel it was premature as well. Their father has taken no responsibility or has shown any interest in their health situation. I stopped all communication and visitation and he recently decided to take an interest. Truth be told Cristian has been there for most BT for both kids and has been Dimitri’s male figure and father figure and here their dad wants to jump in and take his title back that he didn’t earn.
Right when I thought I was on the right track to find inner happiness again, I got knocked down from my feet. I know it has taken toll of my emotions I hear it at work as well. My family was all I had left on my side and now I feel that was torn apart.
I am so tired of the emotional tool and stress and now the only relationship that ever mattered to me, may end because I am numb but at the same time what more could I have done when I took over everything? I feel so lost and drained and that I have done all I can. I feel as if I have lost myself because not any loads have been taken off my back. Yet it is my entire fault.
I am so tired….
Thursday, January 5, 2012
Looking at it differently
I have to say I have met many wonderful people all over the world who live with Thalassemia and every time it amazes me to hear the journeys of others. How much hope it has given me, but also made me a stronger person to be able to raise my kids mentally healthy as well.
Maybe this will make sense to some and maybe some will be thinking I make no sense at all. I have mentioned in the past that as a mother I know there is a different way to live through life. Such as turning 16 and going to parties being wild and crazy. Eating as I wish, no medication I needed to remember. At 18 years old move into my car and travel no doctors appointments plus I didn't have insurance and I didn't care. I was young healthy and free. Yeah it was careless, but I learned so much from that period of my life, how many choose to back-pack through Europe.
In my kids case they will need to have insurance and keep their doctors appointments and remember their medication every day. That used to bother me SO much because they wouldn't have that freedom I did. Then the financial burden when it starts rolling over to their hands scares the life out of me. Every time I would hear the word disease or say it or write it every hair on my body sticks up.
To bring all this together I met a woman with Thal major who changed my thoughts forever. Her spirit so free and full of laughter, full of life! I feel like 85% of the time I am a walking zombie mourning already and here in just an email I felt her life through her writing that shook me up. The one thing I have been saying to my self over and over again today that she shared with me and I never saw Thalassemia in that light "It is a condition not a disease". I don't know if it is my dramatic Greek side of me that was always seeing the negative, but that is true it should be taken seriously when it comes to the treatment, but if you maintain your treatment most likely you are NOT going to die tomorrow and your chances of fulfilling a normal life are still getting better with today's medicine.
"Thalassemia is a condition not a disease or illness, it requires maintenance but there is nothing we cannot achieve."
Thank you koukla for bringing light back into my eyes.
Again we should not be going through this alone, I have found that even from far away so many people have helped me as I hope I have helped them. The best cure is people coming together and making it happen!
Maybe this will make sense to some and maybe some will be thinking I make no sense at all. I have mentioned in the past that as a mother I know there is a different way to live through life. Such as turning 16 and going to parties being wild and crazy. Eating as I wish, no medication I needed to remember. At 18 years old move into my car and travel no doctors appointments plus I didn't have insurance and I didn't care. I was young healthy and free. Yeah it was careless, but I learned so much from that period of my life, how many choose to back-pack through Europe.
In my kids case they will need to have insurance and keep their doctors appointments and remember their medication every day. That used to bother me SO much because they wouldn't have that freedom I did. Then the financial burden when it starts rolling over to their hands scares the life out of me. Every time I would hear the word disease or say it or write it every hair on my body sticks up.
To bring all this together I met a woman with Thal major who changed my thoughts forever. Her spirit so free and full of laughter, full of life! I feel like 85% of the time I am a walking zombie mourning already and here in just an email I felt her life through her writing that shook me up. The one thing I have been saying to my self over and over again today that she shared with me and I never saw Thalassemia in that light "It is a condition not a disease". I don't know if it is my dramatic Greek side of me that was always seeing the negative, but that is true it should be taken seriously when it comes to the treatment, but if you maintain your treatment most likely you are NOT going to die tomorrow and your chances of fulfilling a normal life are still getting better with today's medicine.
"Thalassemia is a condition not a disease or illness, it requires maintenance but there is nothing we cannot achieve."
Thank you koukla for bringing light back into my eyes.
Again we should not be going through this alone, I have found that even from far away so many people have helped me as I hope I have helped them. The best cure is people coming together and making it happen!
Tuesday, January 3, 2012
Starting off the New Year
So far with the New Year, been eating healthy, exercising and even though I am in pain I am still determined to get into shape and show my kids to never give up or let go of them selves. Again our children learn from example not by what we preach.
In other aspects even though I couldn't move forward with new advances I worked for, I am still grateful to have the opportunities given to my family and I.
People are learning about our business thanks to Groupon and I hope business will continue to do well. Angelina in her pre-teens emotionally so pray for us, girls are harder work than boys.
Already I have inspired Dimitri to really consider eating healthy vs. craving the yummy junk foods (Angelina, I don't know if I will ever convince her but there is hope). Taking good health seriously. He also is opening a little business my little entrepreneur and Dimitri will start looking for a High School (that is so crazy High School! When did that time pass?).
I submitted Dimitri a year ago to make-a-wish foundation and gave up on the whole thing, but we got a call and not only did they pull through to inspire him by granting a wish, but he actually gets to have his exact wish in which I never would of thought possible. I can not wait to go home and surprise him. That was the best news all year. It will be interesting when Angelina makes up her mind what she wants. I will keep everyone posted.
Well, even though the New Year is still not done for me it will be interesting to see how it finishes. I do believe that the first 12 days represent each month and how the emotions and circumstances will be so 9 more days to go.....
In other aspects even though I couldn't move forward with new advances I worked for, I am still grateful to have the opportunities given to my family and I.
People are learning about our business thanks to Groupon and I hope business will continue to do well. Angelina in her pre-teens emotionally so pray for us, girls are harder work than boys.
Already I have inspired Dimitri to really consider eating healthy vs. craving the yummy junk foods (Angelina, I don't know if I will ever convince her but there is hope). Taking good health seriously. He also is opening a little business my little entrepreneur and Dimitri will start looking for a High School (that is so crazy High School! When did that time pass?).
I submitted Dimitri a year ago to make-a-wish foundation and gave up on the whole thing, but we got a call and not only did they pull through to inspire him by granting a wish, but he actually gets to have his exact wish in which I never would of thought possible. I can not wait to go home and surprise him. That was the best news all year. It will be interesting when Angelina makes up her mind what she wants. I will keep everyone posted.
Well, even though the New Year is still not done for me it will be interesting to see how it finishes. I do believe that the first 12 days represent each month and how the emotions and circumstances will be so 9 more days to go.....
Friday, December 30, 2011
The New Year
I hope everyone's Christmas was wonderful. We were fortunate and went on a short but well needed vacation to Las Vegas. I think that was our first real family vacation. I was nice to have time with the kids away from life's responsibilities and total attention on them. Though that didn't make it easy at all times having to be mom. I learned that Angelina my 8 year old can get carried away when she is so amused by something that the world is lost and she is so intrigued by what she sees. Eight years I never knew that, does that make me a bad mother? I am happy that Dimitri my 13 year old still likes hanging out with us, but so involved with his image drives me nuts, but again he is 13 years old.
Vacation is good even though it was exhausting physically; mentally I got to forget about the doctors, blood transfusions, and all the rest. Am I a bad mother because I let my kids eat red meat? I wanted them to feel free for a brief moment in their lives as well. They still had to take medication, but I wanted them to enjoy the vacations freedom as well.
I have been so involved in everything for the kids and that is not a bad thing, but I have forgotten everything about myself that I carry a baggage of exhaustion, than happiness. I have to say the trip reminded me that there was a time I used to be a woman and not just a robot. I have been doing my best all week to dress up nice and wear make-up. I am not a jewelry person, but I will put on rings and bracelets to spunk up my look. Instead of buying everything my kids need with any extra money I have in my pocket I splurged and bought a work-out set. I promised myself that I will start taking care of myself I just keep watching the Amber I once knew fade away and I have to give my kids hope not depression. My point is it is ok to be a little selfish here and there. You can even ask for help (that coming from me is funny, I am so independent that it drives those around me crazy) a support group maybe to make a meal for your family on blood transfusion day, I always come back tired. Maybe when you are having a bad day dealing with everything maybe a friend can help clean your house while you take time away to cry it out; or a spouse willing to help you get some time out to take a yoga class. Whatever your thing is BREATH!
Vacation is good even though it was exhausting physically; mentally I got to forget about the doctors, blood transfusions, and all the rest. Am I a bad mother because I let my kids eat red meat? I wanted them to feel free for a brief moment in their lives as well. They still had to take medication, but I wanted them to enjoy the vacations freedom as well.
I have been so involved in everything for the kids and that is not a bad thing, but I have forgotten everything about myself that I carry a baggage of exhaustion, than happiness. I have to say the trip reminded me that there was a time I used to be a woman and not just a robot. I have been doing my best all week to dress up nice and wear make-up. I am not a jewelry person, but I will put on rings and bracelets to spunk up my look. Instead of buying everything my kids need with any extra money I have in my pocket I splurged and bought a work-out set. I promised myself that I will start taking care of myself I just keep watching the Amber I once knew fade away and I have to give my kids hope not depression. My point is it is ok to be a little selfish here and there. You can even ask for help (that coming from me is funny, I am so independent that it drives those around me crazy) a support group maybe to make a meal for your family on blood transfusion day, I always come back tired. Maybe when you are having a bad day dealing with everything maybe a friend can help clean your house while you take time away to cry it out; or a spouse willing to help you get some time out to take a yoga class. Whatever your thing is BREATH!
Here is to the New Year may your children be free of any complications and Healthy. May us parents find the strength to walk away to take care of ourselves and come back stronger. HAPPINESS, HAPPINESS, HAPPINESS!!!! All the love to you and your families!
Tuesday, December 20, 2011
Holiday stress
I am so sorry for my delays this past two weeks. Of course I thought taking a vacation instead of gifts this year would relieve the stress, but truth is other people's stress can still get to you.
Pressure has been put on from work not due to my personal but to the economy and that now has effected taking care of my kids treatments. It is so crazy trying to keep a normal life and maintain doctor appointments. Last night I was so stressed out from my review that I just broke down and cried when I realized I had to take my kids in for labs this morning. I had to be into work earlier than usual and luckily my kids were out of school and Cristian bumped his appointment to take the kids. Then to make me feel like the worst mom after Angelina called me and said that she cried because she needed me there and I wasn't there.
I promised her that I would be there the day of blood transfusion. This is so hard trying to stay normal and smile when all I want to do is cry and scream. I am one person trying so hard to do my best and now I am being told I am not doing my best.
After the kids went to labs I get the call from the nurse that one kid is ready to transfuse and the other can wait til next week. Here I already am missing work and to get the kids on two different days NO WAY! so had to compromise with Christmas on Sunday and every thing closed and bumped the transfusion two days in hopes to keep them together. Sorry if I don't make a whole lot of since. I think I am going to get through this week, go enjoy my children this Holiday weekend, and just be grateful they are getting the BT they need this week.
Sorry if my stress has gotten to you, or if you have the Holiday stresses. I truly wish every one a Happy Holiday season, and remember to enjoy your loved ones, and never take them for granted. It truly is NOT the gifts that make the day special, but IT IS the people you spend it with that make it special.
Pressure has been put on from work not due to my personal but to the economy and that now has effected taking care of my kids treatments. It is so crazy trying to keep a normal life and maintain doctor appointments. Last night I was so stressed out from my review that I just broke down and cried when I realized I had to take my kids in for labs this morning. I had to be into work earlier than usual and luckily my kids were out of school and Cristian bumped his appointment to take the kids. Then to make me feel like the worst mom after Angelina called me and said that she cried because she needed me there and I wasn't there.
I promised her that I would be there the day of blood transfusion. This is so hard trying to stay normal and smile when all I want to do is cry and scream. I am one person trying so hard to do my best and now I am being told I am not doing my best.
After the kids went to labs I get the call from the nurse that one kid is ready to transfuse and the other can wait til next week. Here I already am missing work and to get the kids on two different days NO WAY! so had to compromise with Christmas on Sunday and every thing closed and bumped the transfusion two days in hopes to keep them together. Sorry if I don't make a whole lot of since. I think I am going to get through this week, go enjoy my children this Holiday weekend, and just be grateful they are getting the BT they need this week.
Sorry if my stress has gotten to you, or if you have the Holiday stresses. I truly wish every one a Happy Holiday season, and remember to enjoy your loved ones, and never take them for granted. It truly is NOT the gifts that make the day special, but IT IS the people you spend it with that make it special.
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