My first instinct was to hold all of this information inside. I did not want the world to see me as a "dying person". I do not ever wish anyone to pity me. But, then I realized, I am a writer. Writing has very much been a part of my life since I was eight years old. Writing is my therapy. What if sharing my experiences will help someone else out? What if I can give someone just a glimmer of hope or inspiration to help them find their own peace of mind? So, in essence, holding all of this information inside is simply not an option for me as I am a writer. God gave me this wonderful talent and I am going to utilize it for the greater good.
Yesterday was my breaking point. I hadn't cried, I had no emotion, I hid my feelings and I thought that was working out quite well for me; until yesterday. It was as if my monster attacked me all at once. I felt overwhelmed with anxiety, I was angry at everything, and I wound up crying myself to sleep. This monster that attacks me from all angles keeps me from being able to do the things I once enjoyed. And yes, that part really pisses me off! I have to rest before I do anything. I love cooking for my family and I am used to going all out to make them huge homemade meals. That has proven to be so difficult. I have to save all of my energy until it is time for me to cook or my body will be so exhausted and then my family misses out on the one thing I know that makes them happy. My family actually still sits down at the dinner table for supper and we make it a point to talk to each other about our day. When my monster is too much, we miss out on that valuable family time. So, when yesterday hit me....I was a mess. I thought of all the things I am missing due to my illness. I cannot even go out in public without having to wear a mask and carrying massive amounts of hand sanitizer. Now that I am on high dosed steroids, I cannot even do that. I have to stay home unless I have appointments. Even though my body is attacking me every single day, I have realized that the most important thing for me to do is remain positive.
Yes, having three rare forms of vasculitis is crap, but it is so very important to remember the things in life that you have to be grateful for- because they are out there. Each of these positive things is another reason to fight, and not to accept this disease- and fighting with your focus on the positive things in life has, to my mind at least, got to be the very best way to fight.
The last month has been, without a doubt, the hardest part of this battle so far. The fatigue, the thrush, throwing up every single day, throwing up blood at times, not being able to catch my breath, the 60 Mg's of Prednisone, the chemo, walking to the kitchen, and the mental toll has been enough to literally drive me crazy. I am confined to my house...mostly to my bedroom. My kids spend almost every waking moment in my room with me watching movies and just cuddling with me when I am resting. As a result, this month has also been the biggest test of my resolve, and it has been very hard at times to remain positive. I have spent every day in one place, in pain, and beginning to lose hope that things would ever improve. Last night, while lying in bed, I stopped to compare my life now; to the day before I was diagnosed- something I had never really done before. What I realized was that vasculitis has stripped away pieces of my life, one by one. It has happened gradually, over a period of 35 years and I have just dealt with each blow as it has come along, got over it and moved on- but by comparing my start and end points, it really hit me how much this disease has truly affected my life.
It made me realize just how hard fighting this disease truly is, and what all is involved. It's really not just about fighting the disease, the pain, and the side effects- it's about fighting for all aspects of your life. Because bit by bit, if you let it, it will strip away your world. The effect my disease is having on my children is the hardest part about being sick. A year ago, mommy was able to be adventurous....mommy had the energy to be everything they needed. And now, they are everything I need. They help me so much and without them, my life would be in complete shambles.
Today is my very first appointment with my Rheumatologist. Today, I will find out what my next step is until I have my open lung biopsy (which by the way, I am terrified of that surgery). I have been waiting a year to see a Rheumatologist because they are private pay doctor's or my insurance has not been accepted at any of their offices. This particular Rheumatologist has agreed to see me for free (see there is a positive) because he is the key to my treatment. I have a team of physicians...my Rheumatologist being at the top of that chain; I see a Pulmonologist, a Neurologist, an Oncologist, a Nephrologist, a Urologist, a Cardio Thoracic Surgeon, an Orthopedic Surgeon, my regular doctor, and a Therapist. These doctors all coincide with one another to find my best treatment route. All of these physicians are amazing and without even one of them, my prognosis would be even worse than it already is.
We all know the story of David in the bible. I desire to be like David. I want to stand in front of my giant and proclaim that it is defeated. I want to be fearless because I know my God will rescue me from my circumstances. He's never failed before. He will not fail now. God never changes. He is the same now as He was in biblical times. He is still working miracles and showing us His grace. It's just not as advertised as all the negative things that are happening in the world today have taken over. God is bigger than any of this!
Proverbs 3:5-6
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight."
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