Alright, here goes nothing!
I think the best way to do this is to start from the beginning….
My mom was in her 30’s and my dad almost 50 when she was pregnant with me. I am their only child together, but both of them have 3 other kids by other people. The doctor did the pregnancy testing and told my mom I was going to be a very sick baby. They told her I might have Down syndrome as well. They advised her to have an abortion to save me from a life of sickness. She told them no, that she would love me no matter what. I don’t have down syndrome, but I am very sick….
I was born January 19, 1992. My mom had to have an emergency C-section because my cord was wrapped 3 times. They told her if she pushed it would kill both of us. Two weeks later, I was back at the doctor with pneumonia and high fever. That was only the beginning of my mom’s worry. Before my 1st birthday, I was hospitalized 2 times. One spinal tap. Tons of x-ray and blood work. I spent my first Christmas in the ER, and my first birthday I was sick. I got my pediatrician records a few months ago, over 100 pages front and back. There was not ONE week between my birth and when I was around 5 years old that I was not in the doctor’s office with 102-103 fever and lung/sinus issues. I had my first surgery at 6 months old (tubes), and before I was 16, I had 14 sinus surgeries, 7 sets of tubes, tonsil and adenoids, as well as a scope down my throat for stomach issues.
I missed so much school. My mom got sent letters I don’t know how many times because of my attendance. They never got her in trouble, though, because I made straight A’s for the most part, so it was not hindering my school work. I had sinus surgery EVERY 3 months from the age of about 10 to the age of 16. Finally, my ENT said he could not do anything further and referred me to a specialist (you would think they would have done that when I was a baby, but story of my life). The specialist done 2 sweat tests for CF. Both were borderline; however, they never looked any further. I believe my sweat test was 58 and 60 is positive. So, I was basically told I had asthma, allergies, and sinusitis.
I went to college, got pregnant, got married, and we moved from MS to AL to FL to LA then back to FL. Never stayed in one place more than a few months, so I was never able to establish an ENT or primary care. While in Louisiana, I was hospitalized for 10 days because of pneumonia from mold. They discovered I had severe lung scarring. We finally got back to FL and I found a good ENT. He took one look at my sinus CT and lung CT and said, “you have Cystic Fibrosis”. I said no way because I was borderline at 14. He said yes, you do. Sure enough, this time the sweat test was VERY positive (I believe around 85). He referred me to specialist at UAB for CF and ENT.
They did their genetic testing for the most common CF genes, and all were negative. At that moment, despite my bronchiectasis, despite the mucus buildup in my sinuses, despite the THREE positive sweat tests and positive NPD (Nasal Potential Difference), they basically said they didn’t know what was wrong and wrote me off. My ENT however did not give up on me, and demanded they treat me correctly. The sweat test is still the gold standard for diagnosis along with the NPD. Both were positive. So, they diagnosed me officially with CF. However, they sent me to an immunologist who then referred me to the geneticist at Vanderbilt. She said NO doubt 100% it’s CF. However, I am now in the undiagnosed disease network to find my genotype. They said my genes are either going to be unnamed, or an undiscovered gene that causes CF that they hadn’t discovered yet. I am about 3 months away from going to Vanderbilt for my OFFICIAL results to get my gene type.
Not having the “normal” CF genes is rare, like really rare. I believe like 6% of the population of CF people do not have the normal genes. But, because I am not a “normal” CF patient, that comes along with the judgement and doubtful people. I have basically cut off the majority of my family because they do not believe I have CF. They believe I am making it up for attention and sympathy. There are certain people in my family that get a cold and have everyone calling and checking on them. Not me, I have a basically terminal illness and I can count on one hand how many family members have called me to check on me. Even when I am in the hospital, even when I am sick, no-one cares. My dad’s classmates from school care more about me than my own family.
Then you have those in my family that think everything is a competition. “Oh, I know I had pneumonia it was terrible, but I still did what I had to do and took care of my kids”. “Oh, I know I gained 5 lbs. because I had a steroid shot” I have gained 100 lbs. from FOURTY rounds of steroid from the brain surgery. “Well, _______ had REAL brain surgery for a brain tumor so its way worse than yours”. I had brain surgery (Middle Fossa Craniotomy) for SCDS (Semi-Circular Canal Dehiscence), and someone in my family had the audacity to say it was not “real brain surgery”. UM, well I have a scar on my head to prove it was. They held my brain up for 8 hours to do it. No, they didn’t do anything to my brain, but it was still brain surgery. “Oh yeah I pulled a muscle in my back, so I know how bad back pain is, but I still go to work and stand on my feet.” And this is why I don’t talk to any of my family. I have bulging/herniated/degenerative l4l5 l5s1. I have a tear in the high intensity zone of my l4l5 l5s1.
So, basically this is the short version of my life for the past 27 years. I have always been the black sheep of my family. Everyone else can get help from their parents and its okay. They can pawn their kids off while they go on vacations, but heaven forbid I get ANY help with my kids at all. My mom lived with me for the past few years because of my health issues. I have two small kids, one with autism. So, leaving my kids with just anyone isn’t an option. My aunt couldn’t STAND the fact of her helping me. Even though I live 300 miles away from ANYONE I know or trust. It was a pure SIN for my mom to help me with my kids. even though I was here, home 24/7 with them. She was here to help, but I never left them for ANY other reason than doctors or hospitalizations. My aunt finally got what she wanted because my mom moved out. The funny thing is, they keep their grandkids ALL the time. However, they all live within 30-40 minutes of each other. So, the kids can come and go. For me, it’s not that easy. I live 4 hours away. So, I can’t just drop my kids off whenever I need a break. I have them, 24/7 365. They keep their grandkids for their kids to go to the casino, go on luxurious vacations, or just because. I don’t have that luxury. I have a REAL TERMINAL chronic illness/pain, but they all make it like it’s a sin for me to have any help.
So now, it’s just me, my nephew, my husband, and my two kids. My nephew has been a GOD SEND. He is so much help. But he doesn’t drive. So, when I’m sick, or in pain, or just feeling like I’m going to die, I still have to go to the store. I still have to go sit in car pick up. I still have to drive myself/kids to the doctor.
But you know what, that’s okay. I have learned a lot about myself in the past few months. I have learned I am STRONG, and I can handle a lot more than I thought I could. Does it suck to have to drive and sit in car pick up for an hour when I can barely move?
I hope my family is happy with themselves. I am not even going to have a funeral because I’m not going to give them the chance to come cry over my coffin and act like they cared. Because NONE of them do.
So, you are basically caught up with my life for the past 27 years now. I promise this is the last post I will have a negative head space about anything. I just wanted everyone to understand where I am coming from. I will make a post about my sons autism at another time, because thats a whole different story.
Until next time…