Since I was diagnosed, I have seriously celebrated the month of June as my birthday month. This month, not so much. I have had nothing but bad news this entire month. I was told I did not have much longer to live, and now I am scrambling trying to raise enough money on gofundme so that the pressure can be lifted from my mother and husband to give me the cremation and memorial service. They certainly do not have the money to send me off. Then, even though I have been paying on my car every week, which had been in the shop and this was the agreement between the dealership and I, they refused our payment the other day and demanded five hundred dollars or they would put the car back on the lot. We, of course, did not have that kind of money, so we wound up losing our car. I am beyond pissed. If you are a Gainesville resident, steer clear of Marler Used Cars. They will use you for every penny you have and sale you vehicles that do not work!
I am angry. I am sad. I am grieving. But, I am not afraid to die.
What scares me the most is suffocating to death in front of my children. I do not want them to see me that way. Suffocation is a real possibility since IPF squeezes the life out of you. So, I am afraid to suffocate to death. If that is how it shall end, I pray it happens when I am sleeping. I could not imagine any of my family seeing me that way.
I never realized until recently how unusual it was for all my friends and family to rally around me and support me as much as they have since my diagnosis. Apparently, most cancer and IPF patients lose touch with at least one person that they were close to pre-cancer and IPF because that person simply didn’t know how to deal with the diagnosis and carry on the relationship. The opposite was true for me –when four of my closest friends that had practically no money asked what they could do for me. They would help me with the kids so that I could rest or help me clean house. Two of them even helped me teach the kids. Last year on my birthday, two of my good friends planned my party from start to finish with my husband. It was a celebration of life party and the them was the 80's since I was born in 1980. It was perfection!
It is incredible what a valuable support good friends can be.
People who have never had cancer or IPF simply lack the perspective to understand the day-to-day realities of living with the disease. If you haven’t experienced it, it just isn’t possible to fathom what patients go through. Even people who spend a lot of time around cancer patients, such as caretakers, don’t have a good idea of what it feels like to have the disease.
It can be frustrating to deal with people who lack perspective. People who think that you should be able to get back with them immediately when they phone or email you, not taking into account that you may be feeling too ill to be social. People who have preconceived notions about what you should be able to do, never having experienced how chemo and other cancer and IPF related medications devastate the body and mind. People who think that their personal situation is the most awful thing that could happen to anybody.
Everyone always asks me if I am alright. They always try to pretend to be a doctor and give me advice as to what I should do next. For example, "Try this tea, it will kill the cancer cells and make you breathe better." It isn't that I am not grateful for the advice, but here is the bottom line, it is not the cancer that is going to kill me. It is not the Wegner's Disease. Although, these are both terminal illnesses as well. It is the Idiopathic Pulmonary Fibrosis. T'sshe only cure, and there is no guarantee in this, is a lung transplant. Because my lungs have cancer and Wegners as well as COPD and Emphysema, I do not qualify for a lung transplant. Lucky me!
Life is full of moments. Some are amazing, precious and unforgettable. Hang on to these as tight as you can. Spend more time with your kids. If they are asking you to sit on the floor and play, give them that. Listen to them when they talk. Go for long walks. Take in all the sights and sounds. Look at the beauty of nature. Stop to literally smell the roses. If someone is in need, help them. Love animals. If you can save even one from a kill shelter, then you have done an amazing job. We have adopted three dogs from a kill shelter, and I love spending time with all ;:of them (we have five dogs, five cats and our oldest cat just delivered five kittens, and a guinea pig). Yes, I run a zoo. Take in all of the beautiful moments that God has given to you before it is too late. Include breathing into that mix.
Life also has bad moments. Learning you are going to die, is one of them. Like I said earlier, I do not fear death, but I am afraid to leave my children, husband, mother, and dearest friends behind. I do not want for them to live the rest of their lives grieving for me. I love them all to the moon and back. I hope they truly understand that.
The first part of this blog is titled "Rage". I am angry, no I am pissed that my life is being cut short! I have big dreams. I want to watch my children get married and have children of their own. I want to go to Fenway Park and have my chance to sing the "National Anthem" like I did in college. I want to go to Wrigley Field and watch the Cubbies play. I want my grandchildren to love to come to our house and stay the night and tell me I make the best food and cookies in the world. I want more time with my parents. I love spending time with my mom. I look forward to our days alone. I want more days to drink coffee with my husband in the mornings. I want to grow old with my husband and rock on a porch swing watching the sunset. I want more time to spend with my best friends. All I want is time! And yes, I am extraordinarily pissed off!
Being angry is part of the grieving process. I am just trying to find a way to heal so I can offer all of you positive words and motivation. But, then I began to realize, life also has ugly parts. So, while I cannot always be positive, I know all of you have these same moments in your life at one point or another. You may not have a terminal illness, but, I bet you might know someone who does. Or, you just might be feeling down in general. I am struggling with depression and PTSD with anxiety. Life is hard for me on a daily basis, but I manage to push myself to wake up and spend time with my children and my husband, and yes of course, my zoo. If I can motivate myself to do this, so can you.
The moral of this story: Life can be hard. Life can be beautiful. Life can be terrifying. Life is what you make it. Just keep going no matter what. Get up every single day and thank God you are still alive and breathing, because nobody knows what tomorrow will bring.
Love you all and truly mean it and God loves you too,
Me xoxo
P.S. Please, if you can donate to my fund so that my family does not have to have the burden of giving me a memorial service, please do. Any amount helps in going towards our goal of $10,000. Please open the link and read the story and you will see what all I am raising money for.
No comments:
Post a Comment