I apologize for being away for so long. My blog should be my main focus since it has been the best therapy I could have ever asked for. I have learned so much about my disease and what will happen next, naturally, I have to update all of you on everything I know as of now.
The type of pulmonary fibrosis I have is IPF (Idiopathic Pulmonary Fibrosis).
I am fighting for my life because no one else will or can.
I have the cough.
I have the velcro crackle in my lungs.
I have crushing, cold pain in my chest.
I have the devastating exhaustion,
I now have heart problems- various kinds of palpitations and arrythmias.
I have had GERD/Acid refulx.
I have, as all of the other sufferers do, the 'psychological load', including the frustration and depression of not knowing if I have four weeks or four years.
Ironically....as yet the oxygenation and pulse are steady and normal 95%-89%- weird but long may that continue. It must have something to do with my regimen? Nothing is straightforward with IPF- no cause and effect is simple.
Approximately 5,000 people were diagnosed around the same time as me and now more than 3,000 of them are dead. Scary statistic, right?
I am having a devastating flare-up that has lasted since the beginning of March- which is a step further down the un-primrose path- in that exhaustion sets in earlier and I need to rest and sleep more.
I was misdiagnosed with pneumonia for the past two years because IPF mimics pneumonia on an X-Ray. My pulmonary oncologist found it only because he studied every cat scan I had had for the previous two years.
Stay away from people with colds, flu, etc (this even includes my children and my husband...pure crap)!
As for my heart- for the past year or so it has been more annoying than anything. My heart-rate will shoot all the way up to 280 and crash down to 70 in mere seconds.
I think I am more afraid of IPF, no scratch that...I know that I am more afraid of IPF taking my life than the cancer. Believe me, when a doctor looks you in the eye and tells you there is no cure, except a lung transplant and your lungs are not healthy enough for a transplant, it tends to devastate you. It also doesn't help matters when he continues on to say that the drugs being tried are arguably worse than the disease. I will stick to my steroids and have the fat face, thank you very much.
Since I have been in the hospital practically the whole month of March, the shock of my diagnosis has just set in. The sheer cruelty of the way IPF is treating me at this point is dreadful, but that is another subject.
I believe the unknown plays a big part in my fear.
Examples of some things I ponder: How can I slow down the progression of my disease? The answer I have received up until now..."We don't know."
What might cause the disease to accelerate? The answer, "We really do not have an answer for that."
I am taking on the superhuman task of trying to create, as far as possible, my own therapy. The main problem is that the resources made available to one terminally ill are virtually limited or impossible to get. In flare-ups such as this one, I can barely get up from my bed to make it to the restroom.
I am also very limited in what therapy I can do because of, well you guessed it, $$$$$. A family friend told my husband she would be willing to help me get better and pay for my therapy....but she has flaked (answers her phone pretending to be someone else, lies to him). Why can't people just be honest and say they do not want to help instead of taking up precious time, which by the way is all I have? Cruel.
I research my disease as often as I can. I think it is very important to understand everything my body is and will be going through. And no, none of it will keep me here longer. Time...again, time...that is all I want with my children. I have become so obsessed with trying to fight back and cure myself, that my disease has taken over my entire thought process. So unhealthy!
Every breath is a life- affirmation, but I also try to rehearse death with every breath and leave the decision to God. Stupid and silly when I actually write the words down.
Recently being told that your life will be cut short is devastating but I am working on committing myself to enjoy every single moment of every day, and to be the longest surviving IPF patient.
I acknowledge that the minute, hour and day is set- so be it. As it is for everyone- but we, as a society, manage to ignore that fact most of the time. Today is the first day of a shorter life as much as it is the first day of the rest of my life- so I am going to breathe in all it's truth, beauty, and goodness!
I have to endure another grueling Pulmonary Function Test as soon as I am released. I hate PFT's but they are necessary. The ILD Team needs to see how well my lungs are functioning and how much of them are being affected by the IPF.
Since being diagnosed with lung cancer and IPF (and a plethora of other crap), I have not been able to work. I miss work. I loved having a social life...and now that has dwindled down drastically.
Here are 30 things about my illness you may not know:
1. The illnesses I live with are: Lung Cancer, Idiopathic Pulmonary Fibrosis, Ventricular Tachycardia, cervical dysplasia stage 4, emphysema, and chronic kidney disease stage 2.
2. I was diagnosed with everything in 2015 and 2016.
3. But, I have had symptoms since 2013. I got really lucky in finding a nephrologist who took the time to listen to every problem I was having. He took it upon himself to get the lung biopsy...he saved my life.
4. The biggest adjustment I have had to make is: leaving the workforce and pursuing disability. It was honestly the hardest decision I ever made (and now that my family is struggling as much as they are, I often wonder if it was the right decision). I feel like such a failure. I absolutely love working but my body doesn't. I am STILL in the disability process and my quality of life has continued to decline, but at least I have more time with my family.
5. Most people assume: That now that I am not working, my life is a piece of cake and I lay around eating bonbons all day.
6. The hardest parts about morning are: Being able to sit-up on the side of the bed without hurting. Pain is my greatest challenge.
7. My favorite medical TV show is: Grey's Anatomy (duh)
8. A gadget I couldn't live without: My cell phone- it helps keep me connected with the outside world and I can even blog from my phone when my laptop is not convenient.
9. The hardest part about nights are: Getting comfortable (temperature wise) and attempting to alleviate pain! That is something I still cannot crack.
10. Each day I take 23 pills. Yea...it pretty much sucks, but it is what it is.
11. Regarding alternative treatments: I have never tried any but I am not against them either.
12. My illness is becoming more and more debilitating which is quite depressing because I am not sure if I will get to teach my children next year or not.
13. I am in the final stages of my disability process. My hearing date has been set for my birthday (June 17th). By September, it will have been two years since I applied.
14. People would be surprised to know that I am a big kid at heart. I love singing and dancing with my kiddos. If my lungs would work for an entire day, I would spend my day in bliss being silly with my babies.
15. The hardest thing I had to accept about my new reality has been: Learning to say no and learning how to be more flexible in scheduling. I am a creature that thrives in structure with a plan and lists in hand and I have always had a people-pleaser, almost type A personality, so letting go of that and most importantly learning that letting go of that is not equivalent to failure has been a hard hurdle to climb over.
16. Something I never thought I would do with my illness is meet so many amazing people all over the world. I have developed some of the most deep and meaningful relationships in my life after being diagnosed. My life has truly been changed by some of the amazing people I have met (including you guys)!
17. There are no commercials for IPF...and I find that bothersome because more people need to know about the potential for a life threatening lung disease (one contracted by merely breathing). And, the commercials about lung cancer tend to really piss me off. Not everyone that has lung cancer has smoked and it would be nice to end the damn stigma.
18. I really miss playing basketball with the kids since being diagnosed. Basketball was our thing and though I might be short, I could make in some three-pointers like I was really playing for the WNBA. The kids and I got pretty good at it together.
19. I have a new lease on life. There may be days when I want to give up or throw in the towel, but I am in this thing to win it. And I will fight with every breath I have.
20. Since being diagnosed, I have found my passion for writing again. I can vent, I can cry, I can just be free to be me. I love it when the words flow so freely from my fingertips.
21. If I could have one day of feeling normal again I would spend the entire day outside playing with my kids. They miss it just as much as I do.
22. My illness has taught me that I am a total badass and much stronger than I ever thought I could be. I also learned that Jesus is a total badass and the depths of his love, mercy, grace, peace, comfort, wisdom, and fight surpass all understanding.
23. Want to know a secret? One thing that gets under my skin is, "I heard about this juice/supplement." True story.
24. But I love when people ask, "How can I pray for you?"
25. The song that gets me through the toughest times in my life is Casting Crowns "Just Be Held."
26. Something that has surprised me about living with an illness is: How much stronger it has made my faith. I had to do a lot of wrestling but it was through that at wrestling that I truly discovered not only what I believed but why I believed it. It was through the hardship that God’s character was revealed to me in such a deep and meaningful way and I wouldn’t trade that for anything.
27. When someone is diagnosed I’d like to tell them: That I am sorry, that I will be praying for them, and how much I recommend researching and finding a support group to be a part of.It makes an absolute world of difference to feel like you have a place where you belong with people who can actually say “I understand” and mean it.
28. The nicest thing someone did for me when I wasn't feeling was take my children for a couple of days so I could just sleep. Lung disease is so debilitating and I hate my children to see me hurting.
29. I'm involved with advocating because every voice matters. Every single voice!
30. The fact that you took the time to read this list makes me feel very special.
You can't start the next chapter of your life if you keep re-reading the last one. I have been building up to shifting my mindset and starting a new chapter in this LC and IPF journey for a while now. I am ready to change. Or at least try too. Or perhaps a better way to say this is, I am ready to live differently than I have since the day I was told that my illnesses are going to kill me.
Here is the truth...
I am struggling with building reserves. My body craves to be restored, Forcing myself to take the time I need is a battle. I'm semi-successfully managing the bare minimum. "Why is this happening?" gets tossed at me periodically. "Isn't there something your doctors can do?" Reassuring my community, of course they are taking are of me.
My body is beat up. I show it and I feel it. "What's wrong, Shanna?" Attempting to soften my eyes of steel, I grin as I calmly remind myself, "I have advance lung disease and lung cancer, this is what it looks like on me, right here, right now.
I am giving this one hell of a fight. I am a 35 year old woman trapped in a 90 year old body. My strength is faltering but God is my ultimate protector and shield. I just want one taste of what my life used to be....just one more tiny taste.
Love you all and truly mean it....and God loves you too xoxox,
Shanna
LUNGevity National Hope Summit: I'm participating in an event to raise money to fight lung cancer—and I need your help!
I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
Please join me in my efforts to stop lung cancer—the leading cancer killer—now!
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna
Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness
My Go Fund Me Page (any and all donations will help with my medical funds) gofundme.com/hope4shanna2016 
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