Rare Disease Awareness Day

Yesterday was Rare Disease Awareness Day.  It is day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. To start with, I was unaware of the day and unaware that I have a rare disease. I mean, I know I have ITP. I just did not know ITP fell into the category of a rare disease. I had been planning to write about ITP. After hearing about Rare Disease Awareness Day, I decided now would be the best time.  ITP is considered a rare disease because there is fewer than 200,000 US cases per year. 

The official name is Idiopathic Thrombocytopenic Purpura. See why I always just use ITP instead? I always explain ITP as a blood disorder where my dumb blood cells think my platelets are a disease. Then my dumb blood cells attack my platelets. This not only causes lowered platelet counts, but also, causes my blood cells to be too busy fighting my platelets, so they cannot fight off real illnesses. So my immune systems sucks.

I was diagnosed with ITP in college. I had a bad reaction to preventive migraine medication. I ended up in ICU. A side effect of that medication was lowering your platelet count. (At the time of being prescribed that medication, I did not know that I had ITP.) By the time, I ended up in the hospital my platelet count was 5,000. A healthy platelet count ranges from 150,000-400,000. You can understand why the doctors were alarmed. It was a super scary time. The doctors first thought I had a form of cancer. I had a bone marrow biopsy, which was painful. Then I had to wait for the results which ruled out cancer and a few other things. I was officially diagnosed with ITP on July 15, 2000.  

I had to go 3 days a week to get my blood drawn and platelets counted. My veins are still not over that. We tried many treatments but I was a rare case. Nothing worked, except stress. Around finals, my platelet count would soar. The doctors decided removing my spleen would be the best option. Your spleen is wonderful and important, but you can live without it. One function of the spleen is storing the platelets. If you remove the spleen, the platelets would have to remain in your blood stream and not chillin in your spleen.  On March 7, 2001, I had splenectomy, which works for about 1/2 of all those who have ITP. This worked for me. 

My platelet count has remained high for the last almost 15 years. ITP in adults is chronic. I will never be considered healed or cured. I'm considered in remission. I get my platelets checked yearly and before any surgery or procedure. The reason I get checked is there have been cases of ITP coming out of remission, even after long periods of remission. My immune system will never recover. Remember I wrote that spleens are wonderful. Spleens are part of your immune system. Spleens act as a filter for blood for your immune system. Also the spleen fights off certain kinds of bacteria that cause pneumonia and meningitis.  

Between ITP and no spleen, my immune system is awful. I catch every cold, flu, etc.  and it takes me longer to fight it off. For example my daughter had a nasty stomach flu. My husband dealt with most of the vomit. When I had to help clean up, I washed my hands thoroughly. I still came down with the same bug. It took her three days to feel better. Because of my weak immune system, it took me over a week to feel better. Colds can easily turn into pneumonia or bronchitis. My doctor is constantly reminding me that flus can turn deadly for me. That is not me over exaggerating. I ended up in prompt care this fall wth the flu. Usually you don't get treated for the flu. The doctors treat my flu in fears of it turning into a death sentence. I have to receive vaccines yearly. My family does, too. Because anything they bring home (common cold to strep throat) can have damaging repercussions for me. 

People often give me a hard time for "always being sick" and tell me I should get checked out for something serious since I'm always sick. Thanks for your concern. I have been checked out. My doctors are wonderful and help me as much as possible, but this is my reality living with this disease. I truly feel blessed and lucky because there are people fighting much harder health battles. 

Feel free to message me with questions. 

PS We have not found a connection between my migraines and ITP. But I keep looking for it. My migraines have gotten much better.  They are still an issue from time to time but much mor manageable. Once again message me if you want more information. 

To my dear friend

My lovely friend is going through a tough time. I truly believe the Devil is trying to tear her down. We have all been there. We will feel like nothing is going right and we are being hit from every angle. I am praying for you. I tell you this repeatedly. I can't do anything but pray. Here are my favorite Bible Verses and quotes that help me through a rough time. I hope it helps.

Romans 8:31 What then shall we say to these things? If God is for us, who can be against us?

Proverbs 11:27 Anyone can find the dirt in someone. Be the one who finds the gold.

F. Scott Fitzgerald For what it's worth: it's never too late to be whoever you want to be. I hope you live a life you're proud of, and if you find that you're not, I hope you have the strength to start over.

Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us.

Romans 5:3-5 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

C.S. Lewis Getting over a painful experience is much like crossing monkey bars. You have to let go at some point to move forward.

Your journey has molded you for your greater good, and it was exactly what it needed to be. Don't think that you've lost time. It took each and every situation you have encountered to bring you to the now. And now is right on time.

You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should've behaved better.

Pema Chodron Nothing ever goes away until it teaches us what we need to know.

You are allowed to terminate toxic relationships. You are allowed to walk away from people who hurt you. You are allowed to be angry and selfish and unforgiving. You don't owe anyone an explanation for taking care of yourself.

And lastly, my favorite:
1 Peter 5:8-10
Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast.

What I've learned in my 35 years

When I graduated college, I wrote an email to loved ones called what I learned at ISU (outside of the classroom). As I get ready to turn 35 years old, I decided I would write a new one.  (Obviously this will not contain EVERYTHING I have learned. I'm just including my biggest life lessons.)

There is always at least 3 sides to every story (my side, your side, and the truth). 

       The truth lays in between the two people's perceptives. This isn't saying either person is intentionally lying. Instead as humans, we all remember things slightly different. Example two siblings get caught hitting each other. One child says I did nothing wrong. I only hit her back because she hit me first. Other child says I only hit her because she would not give me my toy back. As you dig into the story, you learn more of the truth. I used the simplest story to explain this concept. If you like to explore this concept, think of your favorite memory. Then ask a person who shared that event for their memories of it. I find it fascinating to see what our minds hold on to.

No matter how much you change and grow as a person, some people from your past will never be able to see the new you.

        I'm not the same person I was at 15 or 20 or even 30.  I've grown and changed into a person that I'm proud to be. Yet there are people who knew me at my worse and refuse to see me at my best. That is their problem not mine. That ties into my next thing:

You can't make everyone like you. 

       I was born a people pleaser. I just want to make everyone around me happy. I want everyone to like me even if I don't like them. People keep telling me as I get older I will care less about this. I'm hoping this is true. I know in my head that I can't make everyone like me but in my heart I'm still a people pleaser. 

It is ok to outgrow relationships. 

         I'm not saying you will outgrow every relationship. What I am saying is that not every relationship will last a lifetime. Just because you were best friends in junoir high school doesn't mean you will stay best friends for life. People change. Their interests and focus change. I use to feel so guilty and awful about not wanting to stay close to certain friends. The hardest time was becoming a parent. I was younger (a few months shy of 24).  A lot of my friends were still in the "growing up" phase of their life. I was more in the "I'm grown up and parenting" phase. Some of the friendships have rekindled and now are stronger than ever. There is a saying that I love and works perfect here: "In life you will realize that there is a purpose for everyone you meet. Some will test you, some will use you, and some will teach you.  But most important are the ones that bring out the best in you. Those are the ones worth keeping around."  I can look at anyone in my past or present and place them in those categories. The users I cut out of my life as soon as I realize who they are. Testers aren't always a bad thing. I believe my daughter and hubby test and teach me everyday. They also fall into the final category of making me into the best version of myself. 

You can't force people to change into who you want them to be. 

        There are some great people in my life who have awful ideas about race, money, religion. God says love them anyway. So I pray for you.  The ones that I cut out of my life are the racists. I will pray hard for you. You might still be my friend on Facebook but I unfollow you. That way I don't have to start a fight on why I un friended you. But at the same time, I don't have to see your misguided viewpoint on race. If you read this and think I'm talking about you, then I'm probably talking about you. 

Marriage is hardwork. 

     I could write a whole blog on this. I grew up on fairy tales and romantic comedies. They made it seem like you fell in love and everything was magical. (Oh and Forrest creatures would clean your house.) By the time I found my true love, my soulmate, I learned fairy tales were not real. I even included in my vows that I couldn't promise all rainbows and butterflies. Any relationship in life will have ups and downs. I believe marriage is forever. I do not believe in divorce. That might upset some reading this. I believe you can't go into marriage with any attitude other than this is forever. Or you will set yourself up for failure. There will be days where you don't like each other but you stay because you love each other. Here is my favorite quote on love and marriage: 

"I used to think that when people fell in love, they just landed where they landed, and they had no choice in the matter afterward. And maybe that's true of beginnings, but it's not true of this, now. I fell in love with him. But I don't just stay with him by default as if there's no one else available to me. I stay with him because I choose to, every day I wake up, every day that we fight or lie to each other or disappoint each other. I choose him over and over again, and he chooses me." V. Roth 

Parenting is hardwork. 

     I could, also, write a whole blog on this. You take two people from completely different backgrounds (most of the time) and have them decide how to raise a child together. Then when you add in step parents, you've got 4 different ideas, and 4 very different people thinking they know what is best. To say parenting is a challenge is an understatement.  In the end, you do the best you can to raise a smart, independent, confident, caring person. You'll make mistakes. You must admit the mistake and learn from it. Just know that others are judging but they only see part of the picture. Don't let their judgements make you compromise your parenting. 

Christianity is misjudged over and over. 

         I'm a Christian. It means that I know Jesus is God's son and He died for my sins. And that I've asked him to forgive me of my sins and lead my life. Being a Christian does not mean, I'm perfect. I'm a work in progress. Everyday I try harder. Being a Christian does not mean that I judge others. We are all sinners and have fallen short of the glory of God. Being a Christian is suppose to mean that God is your leader. It means that you are to show God's love to others, even your enemies. This I still struggle with. I pray daily for my enemies. One day I pray, God gives me the strength to show His love to them. 

Mental Health is just as important as physical health but the stigma prevents people from seeking treatment. 

         I have seen some great MeMes lately of this. No one tells someone with a broken leg to just get over it or to just "think positive and it will heal." Yet people do this to people struggling with depression or anxiety or some other form of mental illness. If the person could just think positive and be better, they would. No one wants to live that way. Mental health and physical health are connected. Both need to be treated properly.  I have loved ones who greatly struggle with this. I know how hard they are fighting. I wish the world could see it too. 

Lastly, I still fully believe that everything happens for a reason. 

        I believe that we aren't always going to know the reason. Sometimes we discover the reason years later. Sometimes we never do. But I truly believe everything happens for a reason. I love that saying: "Evertyhing happens for a reason. Sometimes that reason is you're stupid and make poor choices." I know that sounds harsh but it is true. I've made poor choices that have ended badly. You just learn from it and move on. 

8 years

8 years
96 months
2922 days
70126.5 hours
4207590.1 minutes
252455408 seconds
That's how long I've been married to my best friend.  We did both traditional and personal vows. I want to share our personal vows that we wrote. I love them because they are from the heart. You can hear our personalities shining through, especially our humor and honesty. (Before you comment: Yes that was humor where I said he'd become a Cowboys fan. I'd never want him to switch teams just because of me. I love that we can support and cheer for opposite teams.)

Mike: georgette, it's amazing how fast something like love can overtake a person. Almost a year ago  we were nothing more than people who knew each other through a mutual friend. And now, here we stand together to be married. And over the course of that year, my love for you has grown into something that I have never ever felt before. It has consumed me, much like you consume my thoughts every single day. And that love continues to grow even today. every day I can look at you and feel even stronger that you are the one for me, you are the one that God meant for me to be with and to take care of. I love you more today than I did yesterday and I will love you more tomorrow than I today.  

You and gabrielle are every thing to me. I will do everything in my power to provide for, care for, and protect both of you. there is nothing that I won't do do to make sure both of you live the lives that you both deserve. I love you more than any thing.

I love you for you beautiful red hair. I love you for your sparkling blue eyes. I love you for your warm, inviting smile. I love for you the large heart you have for others. I love you for ythe amazing friend that you are to me and others. I love you because you are an amazing mother. I love you because you like to cuddle. I love you because you make me feel good about myself. I love you because you keep me grounded. I love you because you make every one around you happy. And I love you because you are you.

So it is because of these reasons that I am marrying you today.

georgette: I can't promise you everything will be perfect and full of rainbows and butterflies. I can't promise you that our beloved Cubbies will ever win the World Series. I can't even promise that we will never fight or I will never push again. And I know I can't promise that gabrielle will always listen or ever be potty trained. But what I CAN promise you is that I will never stop loving you. I can promise to never give up or leave. I can promise to to always support your dreams and goals. I can promise to always help motivate you in a positive direction. I can promise that no matter what life throws at us, the three of us will get through it together because of our love for each other and our faith in God.

I love so much about you. I love that you never are able to beat me in thumb war. I love that you some day soon will forget about the Bears and become a fan of America's team, the Cowboys. I love that you will not let me push you away. I love that you always look at me with such love and admiration. I love that you pray with me nightly. I love that you can do the impossible and make me believe in myself. I love that you support all my hopes and dreams. I love that you love and treat gabrielle as if she were your own child. I want you to know that I love you simply because you are you. Because of these reasons I am marrying you today.

Wow 8 years! What a crazy ride it has been! We have shared our ups and downs, laughter and tears, health and sickness. You are my ride or die, the pb to my jelly, the cheese to my Mac, my person, my everything. I love you Mike. Here's to a lifetime of whatever God throws at us, because there is no one I'd rather go through with! 

6 year blog anniversary

I started this blog the day my baby girl started kindergarten. I've had to make lots of my writing private but I still wanted to celebrate this blog. I still find it therapeutic to write. Sometimes only for myself and the love of my life to read. It is just nice to get the words and emotions out.

My first entry was about my daughter's first day of kindergarten. It was super emotion. I was a roller coaster of emotions just like many moms when their children start school. Here is a picture from that day.

Look at how tiny she is. 

When we were recently on vacation my hubby took this photo. 

I apologize for the quality but we were skipping down the sidewalk. My hubby likes to catch candid pictures. You can see how much she has grown since I started this blog. What you can't see is the amazing person she is becoming. 

Today she started a new chapter in her life, junior high. I couldn't be more happy with the young lady she is becoming. She is kind, helpful, sassy, funny, smart, giving, just incredible. I love her so much. As sad as I am that she is growing up so quickly, I'm equally excited and proud to see what God has in store for her. 

Stubborn, grudge holding, process to forgive is slow

I come from a long line of strong, opinionated, stubborn people who are eager to prove others wrong. My people hold on to grudges and are slow to let go. We love to argue and prove the other person wrong. Here is an example that I have heard my whole life. My great grandparents came from Greece when my grandpa was super young. They were excited to start over in America. From what I've been told, America did not recognize their training/schooling, so they could not get jobs in their chosen fields. So being the proud, stubborn people that they were, they became angry and refused to learn English. They Forbide English to be spoken in their homes for the rest of their lives.

I have a brother who hates peppers. He is growing ghost peppers, not to eat, but to prove he can. Ghost Peppers are suppose to be super hard to grow. He wanted to prove that they are easy to grow. So he is growing them even though he will never eat them. 

These are just two examples of my family's stubbornness. Stubbornness is not necessarily a bad thing. Being stubborn helps us to never give up despite the odds being negative. When stubbornness becomes a problem is when we refuse to let go and forgive others. I really struggle with forgiveness. 

How do you truly forgive someone when they don't apologize or even admit their wrongs or honestly believe they have not done you wrong? How do you forgive someone who keeps doing the action that you are trying to forgive them for? I want an apology before I forgive. But there are just some people in my life who will never apologize. I want a person to change their behavior before I forgive them. How can I forgive you for spreading lies about me when you continue to do so? It is extremely difficult to forgive in these cases. 

I keep being smacked in the face with these verses: Matthew 18:21-23 "Then Peter came to Jesus and asked, "Lord, how many times shall I forgive my brother or sister who sins against me? Up to seven times?" Jesus answered, "I tell you, not seven times, but seventy-seven times?" 

 This is the quote I have been trying to apply to my life. I truly believe when we hold on to that hurt and anger, refusing to forgive and let go, it causes us so much pain. I have done tons of reflection lately. I've realized part of my inability to forgive is my need for the sincere apology.  I just need to hear they were wrong, they are sorry, and they will not repeat the action. That is in a perfect world. 

What I'm realizing is I need to discover peace and forgiveness without those things. I am a work in process but I'm getting there. So I just keep repeating forgive, let go, move on. 

Maybe I want to be a camp director!

Summer break is in full swing. This time of year I see the usual blog being shared over and over. It is called something like I'm not a camp director or a cruise director, something close to that. Of course, right this second I cannot locate it. It goes on to talk about how the writer is not planning summer fun activities for every second of the day. The writer is against that. That is the writer's choice, but I'm tired of parents shaming each other for varying opinions. Maybe I want to be a camp director all summer, and that's fine, too.  I will not shame you for just chilling all summer. So please don't shame me for my over planning.

I take a portion of my parenting philosophy from the great 90s movie Hook. The mom is explaining to grown up Peter that kids grow up so fast and soon they will be begging their kids for their time instead of the kids begging for the parents' attention. I swear just yesterday gabrielle was a baby and now she will be entering middle school in the fall. They grow up in a snap. "For parenting, the days are long, but the years are short." So for me, I love to plan fun, memorable days. When I worked full time, I had Monday's off. We called them Monday fun days.  Every Monday, we would do something whether it was going to the park, swimming, hiking, or for bad weather days we had movie marathons. When I stopped working, I started really planning summer fun.

We utilize local free events, like the summer ending program at the library and play dates. We go to the $1 movie program at the local movie theaters. Our Parks and Rec department has tons of fun programs like outdoor plays, outdoor movies, park passports, splash playgrounds. We have memberships to the local zoo and Children's Discovery Museum.  We get season passes to the local pools. We have at home art days and movie days. Every summer we watch all of the Harry Potter movies and all the Star Wars movies.

We visit relatives. We plan day trips.  My daughter always attends church camp and one more local camp, depending on her interests. She plays softball, so we practice in the yard. Plus I always make her do school work. I buy a workbook each summer for her to complete. The focus is keeping her retention of what she already knows. This is not her favorite part of the summer but she starts the school year off on the right foot.

I love being a "camp director" and I'm not ashamed of it. Be the parent you want to be, and never let others shame you for your choices.