Job Loss Teaches Me to be Kinder to Myself -PK Scott

[PKScott]

I was 29 when I was Diagnosised with ITP and I struggled to keep my job. I was in and out of the hosipital and finally I had no more sick days. I would just have to take a day without pay. I was put on FLMA and took a year for short term disability. After 6 years of a battle to stay health and to stay employed because I had to have the insurance, I finally had to retire after 12 years of being what I thought was my calling, I had to step out of the classroom and it broke my heart. I had a graduate degree as well as a good income. I had purchased my first home and I was doing well financially, but I was forced to put my health first. I was embarrased that I couldn't do it all. After beiing on long term and filing for permantant disability, I am putting my health first and coming to terms with what I felt was a shameful embarrasment of not being able to do it all. It is a slow process especially knowing there is no cure for my ITP, there is only constant maintanence. So each day, I must take positive steps to stay healthy. The best thing that I have learned through this process is to be kinder to myself and focus my energy in the here & now. I hope you are finding some peace with your new normal. I know that I am, but it comes and goes and everyday is different. Some are better than others, but it helps to know that I am not alone on my journey. Thank you for sharing your expereince and I hope that mine has helpped you or someone along the way. Love, Light, and Laughter. Namaste PK Scott

[akhurram79]

can u share your experience and what life style you are following to keep maintain itp

[PKScott in reply to akhurram79]

Yes, I can share my experience and what life style changes I have made to maintain my ITP health. First, I changed my diet. Over the years I have worked to have a whole food diet for myself and Family. This means that I have focused on buying, eating and cooking whole (non processed, boxed or canned) foods which are organically grown. Secondly, I worked on minimizing the stress in my life. This was much more difficult because it took me to approach life completely differently. I worked one eating go of things I could not control, understanding when I didn't have enough information to make choices and learn how to ask questions that truly answered my questions. I worked on letting people leave my life that were not in a positive place. Third, I worked on letting go of fear. And to that I worked on focusing on the right now instead of yesterday or tomorrow. Fourth, I worked on being okay with myself as I am. I learned to be gentle and kind with myself. I made a list of things that I like to do when I am happy. When I find myself struggling, I look at my list. I take walks a lot more than I used to do as well as sit quietly. I have also started a Thankful Journal. I do my best I write down 3 things that I am thankful for in life. Somedays they are simple as, "I am thankful for breakfast." In fact, I am still working on all of these things because I learned in this process that it is a process, it is not a destination.

[akhurram79 in reply to PKScott]

that is so great thank you so much for your sharing

[Billmox]

Hi, its a shame that you could not continue teaching, was you pushed out. I was able to continue as a front line EMT and my platelets never went above 25 and at times I am sure were lower, and no medication for the ITP, just medication to manage my splenectomy. I am not sure where you are the US?. Have thought of becoming a private tutor, with your skills. anyway chin up, and don't let get you down.

Regards Bill

[PKScott in reply to Billmox]

Thank you for your response Bill. I was not pushed out of teaching. It was my choice to leave. I made this choice because I know that children need a safe, consistent environment in order to become successful and productive members of society. I was not creating nor maintaining this environment because of my health and mental fears and frustrations due to my ITP health. I was not the teacher, I knew that children need. This did not mean that I did not love my career. I just knew that no matter what I did, my health or lack of health was not suited for my wants. I learned through this process that it is not all about what I want, it is about how helpful I can be to everyone and everything around me. My husband and I made a decided to live a happy and successful life on one income. After I left the standardized educational environment, I began to research (with my doctors encouragement and support) the US Governments Disability definition for ITP: "The US Social Security Administration (SSA) discusses disorders of the blood and circulatory system under Section 7.00 Hematological Disorders, and defines “chronic” as lasting at least three months. You must have been examined at least twice in that three-month period. Chronic Thrombocytopenia, regardless of the cause, is considered under Section 7.06. To meet the requirements of this listing, you must have a platelet count that is repeatedly below 40,000 AND have at least one of the following symptoms: at least one spontaneous hemorrhage which required transfusion within five months prior to filing for disability benefits OR you must have had intracranial bleeding within twelve months prior to filing for disability benefits." I was eligible for Disability. What that meant to me was medical insurance coverage for my ITP and a portion/percentage of my income that I had already paid to the government's Social Security Program. With the Disability coverage, I was able begin a new life of healing. I tutor sometimes and I write. I have made the focus of my life my family, health, and helping others with ITP in any way I can. Thanks a gain for your reply. I enjoyed reading your story.

[Billmox in reply to PKScott]

Hello there,

Thank you for your reply, there is a big difference between the US and UK heath care systems, I have been lucky in that my ITP has not lead to any bad episodes, apart from when I have knocked myself.

All the best

[PKScott in reply to Billmox]

Yes, I agree with you that there are so many differences with the health care systems around the world. I am pleased that we have these avenues in order to connect.

[8616927]

You are a light in the tunnel for many with ITP. You are a winner, never fear. Just keep doing what you do and thanks for the inspiration.

[PKScott in reply to 8616927]

Thank you for reading my post and sharing your response.

[dede7]

That's awesome

[PKScott in reply to dede7]

Thank you! Everyday is a new day and I believe that WE are all doing the best we can.

[ITPAffecty]

Feels sad that you lost so many things in the earlier period of lively life. But did you have so serious problems with low count or was it just doctors who were not letting you lead normal life? Because my count is always in 10-20 and I was diagnosed when I was 23 and I am quite leading normal life since 3 yrs without going to doctors. But now I have to go to doctors in USA (before I was in India) for other health issues and just scared reading your story.

[PKScott in reply to ITPAffecty]

It did feel sad and it felt unfair. I was angry and afraid for a long time. I didn't like the way I felt or my health. Something inside of me pushed me to change. I am so happy that I stopped trying for the life that I thought I was supposed to have and begin living the life that I do have. I was a radical shift in my health and most of all my perspective. My doctors supported me wanting to be a teacher and staying in the standardized educational field. However, when I made the choice to change my life, my doctors were even happier and let me know that they believed that this was the right choice for a healthy and positive life. I have learned that medicine is not an exact science. My doctors are my medical support team. At the end of the day, I make all the choices for my physical and mental health. I have used my skills to learn about my ITP and to help guide my medical care. I feel comfortable and confident that the choices I make withy doctors will be the best for me. I'm learning everyday. Some days are harder than others and somedays are better than others. I have no regrets, only life lessons that I do my best to learn from as I do my best to enjoy each moment in my life.

[ITPAffecty in reply to PKScott]

That's good if you don't regret on anything that happened and the decisions you took so far. Wish you great health and thanks for replying..

[PKScott in reply to ITPAffecty]

wishing you much health and happiness for yourself and those who you love.