Which one is it?

Can you tell which of these photos I felt sick in? Some of them are from the hospital, some are from the car pick up line, some from the house. The answer to the question is every single one of them.

 

Some of them I have on makeup and curled hair which hides the red face and tired eyes, but in EVERY single one of them I was sick. Maybe having a good day or not feeling terrible in that photo, but I was sick. I have had someone say to me, “you look so healthy, I’m so glad you’re over the sickness”.  Just like someone said how far Bentley has come, and asked was he still autistic…

 

Autism and CF are GENETIC. They can be NOT be cured or healed. Yes, Bentley has come so far in the past year with his speech and his behavior, but I assure you he is still autistic. Yes, the IV antibiotics got rid of the active infection in my body, but I still have CF.

 

The worst thing anyone has ever said to me is that I don’t have enough faith in God and that’s why I am still sick. That I “don’t want to be healed” so that’s why I don’t have faith. I believe in God 100% and I believe he is powerful. BUT EVERYONE is not meant to be healed. Everyone’s testimony is not healing. Some people’s testimony is that through everything, they have been through, every trial, they got back up and fought another day. Their testimony may be that he gave them the strength to fight through everything and anything life threw at them. Telling me that I don’t have enough faith and that it’s my fault that I’m still sick is a slap in the face. I pray every night that I have the strength to get up and do what I need to do for my family the next day.

 

However, I am realistic. I’m not going to live my life dwelling on the fact that God MIGHT cure me. If he does, then that’s wonderful and I will praise him. If he doesn’t, that’s okay too. I am a realist. That means that I am straight to the point and realistic about my expectations. I know I am strong, and I could probably do a lot of things, but I don’t. Because while that day I may be able to do it, the next days after will be torture for my body. I don’t plan anything too far ahead unless I have to, because I never know if I’m going to wake up sick & end up in the hospital. That is my reality. I have to bargain with myself on what I can and cannot do, realistically.

 

Please, take my advice. There are a few things you should NEVER say to someone with chronic illness, invisible or rare illnesses, or chronic pain.

 

“If you had more faith, God would heal you”

“You don’t look sick, are you SURE you are diagnosed correctly?”

“If you just take ______, it’ll cure you!”

“My sisters brothers cousins aunt has that, so I totally know what you are going through!”

“I had a (pulled muscle, pneumonia, flu, cold) last week and I thought I was dying so I can totally relate to how you feel being sick”

“Maybe if you exercised more or ate healthy, you would feel a million times better!”

And the worst of all

“You are always sick, it can’t be that bad, there’s no way anyone can be sick this often AKA you’re faking or exaggerating”

 

You want to help your friend/family member? RESEARCH their condition, ask them REAL questions, say “if you need anything let me know AND MEAN IT, but most of all, DO NOT question whether they are really sick. DO NOT tell them it’s their fault they are sick.

 

be kind to one another

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I have had a rough week to say the least. I got a call that my uncle died, and my dad (who is older), needed me there. So, me and all of the kids made the 4 hour trek home to good ole MS. I was excited to see some of my cousins that I haven’t saw since my grandma died. It’s crazy to me that families can just fall apart after the most important passes away. My grandma was the backbone of our family, and when she passed we all just kind of fell apart. I hope maybe we can all start getting back together more often.

Being home in MS is a see-saw of emotions. I miss home. I miss my mom & dad. I miss my best friend. I miss those old country roads that I could drive with my eyes closed. Leaving is the hardest thing I have to do. But at the same time, I cannot wait to get home to my bed, to my husband, to Florida. I would never, ever want to move back to Mississippi. It doesn’t make it any less hard for me to leave, though. It’s just crazy how you can feel so many emotions at one time.

The worst part of the trip home (other than the funeral) was the huge argument I had with my parents. We were all having a conversation and they told my nephew that when I “got better” he could go back to work and everything would be okay. I told them that I am not going to get better. I may have better days, but I am not going to be “cured”. Cystic Fibrosis is PROGRESSIVE, which means it is going to get progressively worse. They refused to listen. They told me if I had more faith in God that he could heal me, and that the reason he hasn’t healed me is because I haven’t believed in him enough to let him. How can you say that to your child? How can you say I don’t want to be healed and thats why I don’t have faith? I don’t know why they cannot understand that it’s not about my faith, its about reality. Yeah, I could sit here with my head in the clouds and twiddle my thumbs until I am “healed”. Or I can be realistic, proactive, and live my life to the fullest not hoping for false hope of being healed. Do I believe that a cure or at least a medicine that can help slow down the progression will be found? TOTALLY! Do I think I am sick because I do not have enough faith? NO. If that was true, my aunt who was the most devout Christian I know would still be here. My grandma who never missed a church service since she was a child would not be bed ridden. Faith gives you a sense of hope, but it can only last so long. I have to be realistic and not live my life with the “What if’s”.

I don’t know what else I can do. My mom has been to many of my appointments. She has heard the doctors. She has saw the diagnosis. She even heard the doctor talk about my TBM and how it could kill me faster than the CF does. She says its the only way she can stand to be so far away is to convince herself I’m not sick. But thats not fair to me. A girl from my hometown got pneumonia (she has CF), and she died a few days later. My mom was so surprised and upset. I couldn’t make her understand that it could easily happen to me, and this is why I cannot let small colds just run their course. I’ve always been told I exaggerate and run to the doctor too fast. A simple cold can go from 0 to pneumonia overnight for me.

Long story short, if you are a parent of a chronically ill child, please understand them. Please understand the diagnosis. Please research, please look for ways to help them, please just make an effort to understand. Please do not make them feel that they are the reason they are sick. Please don’t tell them that they just need to have faith and believe in God and they can be healed. Please, just please, accept and understand them. The last thing I need is to feel bad that I am stressing them out and having them have anxiety. Imagine how I feel, being the one in pain and who has to deal with the fact that I can’t be cured. I AM the one who has to live with it everyday. I cannot run away, I cannot forget it, I am reminded daily.

 

You don’t have to be positive all the time…..

OH and these people claim to be a Christian. 😂 the Bible they read must be different than mine.

Heres my two cents.

I have cystic fibrosis. I live 300 miles away from any family (not that they care or would help me anyway.) Bentley has autism. I’m doing school. My husband works 5 days a week overtime. I have to go 300 miles away to even get proper care for my CF and sinuses. I have had 10 major surgeries JUST in the past 6 years (emergency appendectomy, emergency gallbladder, brain surgery, hysterectomy, a high risk pregnancy, back surgery, 3 MAJOR sinus surgeries) and more hospitalizations than I can count (just in the past 3 years its been 10 that weren’t related to surgery but just being sick). All while doing school work full course load.

Yes, I post a lot. Yes, I do complain SOMETIMES. Yes, I get depressed and lonely. Yes, I share stuff related to how I feel about having a chronic illness and chronic pain.

Am I attention seeking? NO. I update on my health because my dad and mom live 300 miles away and its easier to write one big post than to have to call/text a bunch and answer a million questions. My dads friends ask for updates because unlike 99% of my family, they care about me. Am I trying to spread AWARENESS for JERKS who think because I don’t “look sick” I’m not.

I know I post a lot. I share a lot of posts other people make that I feel fit my feelings and situation. Am I hurting you by posting? Am I running up your phone bill? Is it directly affecting your life in any way? The answer to all of these are NO. It’s ironic that the people who say things like this, are the ones who post the same old type of selfie every single day. TALK about seeking attention.

If you don’t want to see my posts, get annoyed by me posting too much, or want to be negative, there’s a way this can be solved. Simply UNFRIEND me. I promise you, I’m not goin to lose ANY sleep over you. I probably won’t even notice you are gone. Theres also a BLOCK button so that I don’t ever show up on your timeline again.

“normal” people can post selfies, complain about how their hair didn’t do right that day or how they have a cold, and this is fine. get a little sniffle or your kids do and you post for prayers and everything, but heaven forbid I have a LIFE THREATENING illness and I post asking for prayers. I would absolutely KILL to be able to be normal and have my only thing to complain about be that im tired from being able to take care of my kids or from working a full time job. Petty stuff that people complain about on fb EVERY DAY and I never say anything or post vague facebook posts about. Funny thing is, when I was doing photography and did free sessions for all of these people, they were acting all buddy buddy with me. But now that I have nothing to offer them, crickets.

Talk about full of yourself. The part I think is hilarious is how people try to pretend they are so perfect, have the perfect life, perfect kids, perfect marriage. YEAH, right. Okay.

BUT PLEASE. Continue to complain about me. My ears burn daily from the amount of talking that goes on about me in my family. There are certain people in my family that get a sniffle or their kids get a cold, and heavens gates flood open with support, kind words, and people offering to help. I go in the hospital because of SERIOUS infections, and no-one even calls to check on me.

Just so everyone knows, when I die, I won’t be having a funeral. I am NOT going to give these people the chance to come crying over my grave pretending they loved me. And I have given full permission to my husband to go off on whoever calls trying to pretend they do care after I am gone.

if you feel like this is directed to you, its probably not.
But if it strikes a nerve then it must be true. *shrug*

*drops mic*

Where do I begin…..

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…

 

Update

Last time I updated this thing was after I left Mayo Clinic. A lot has happened since then.

The genetic testing that Mayo Clinic did came back negative. To say I was bummed was an understatement. But, I realized it was just another part of my journey and I had to accept it. I got accepted into the UDN (Undiagnosed Disease Network) through Vanderbilt, and they are doing more in depth testing. They believe that I will have a rare, undiscovered gene that causes Cystic Fibrosis. They have given me the CF diagnosis already because of the positive sweat test and CFTR gene, but I do not know my exact mutations yet.

I had my yearly CT scan of my lungs, which revealed collapse of the main stem bronchi and trachea with exertion. They did a bronchoscope, and sure enough I have TBM (TracheoBronchoMalacia). I am still in the waiting to see an IP (Interventional Pulmonologist) for treatment options. This just adds more fuel to the fire.

I was hospitalized 3 times (this week most recently) since my last post. The hardest part about it is that my CF center is 3 hours away. It makes things so much more complicated because my family has to rent a room so that I’m not 300 miles away by myself. Among the things CF has taken, our money is one of them. We figured out that between hotels, gas, medical bills, and food we spent about 10,000 last year. That’s not including what we paid for insurance.

I refuse to back down though. I will not stop until I am on a fully functioning treatment plan to help me live my best life. I am going to Jacksonville to have PRP(Platelet Rich Plasma) injections that will supposedly heal the tears in my back which cause most of my back pain. I am also about to be in a trial for the a medicine that will help with my CF symptoms.

Everyone is telling me I should write a book. I want to, I have always wanted to. I have so much story to tell, but I don’t even know where to start. I hope maybe I can find a way to get started telling my story. Until then, this blog will be my space to tell my story.

9357 days

9357 days. That’s how many days i lived my life not knowing what was wrong with me. So many times everyone said “why do you stay sick so much?”. So many of my teachers believed i was playing hooky. “There’s no way one person can be sick this often”. All i could say in reply is “i have a low immune system”.

Having a diagnosis to put with my illness is like finally finding out the gender of your baby. You know you have something in there. You feel it, you know it’s something, but that confirmation just makes everything real. Most people would be devestated to hear those two words: cystic fibrosis. But for me, it was a sigh of relief. I FINALLY had a name to put on my symptoms. I finally had a reason why i stayed so sick. I wanted to go back to all of my teachers and say “I told you i wasn’t faking!”.

My life has changed drastically since that day. I now have breathing treatments, antibiotics, picc lines, hospital stays, tons of doctor appointments. Before when i would get a cold, it was just that, a cold. Now, the moment i get a small sniffle, i have to report to the doctor for antibiotics immediately. There is no cold too small, no sniffle too short. I have to be careful where i go, who I’m around, what i do.

I wonder often what my life would have been like had i been diagnosed early. What would be different? Would i have ever had my kids? Would i have ever went to college, met my husband, got married? It’s hard not to wonder what if. My life is a constant battle of pacing myself. Some days i feel like i could run a marathon (although there aren’t many of those days). Some days i feel like getting out of bed is going to put me into the grave. It’s like walking a tightrope between what i can do and what i want to do. Will what i do today put me in the hospital tomorrow? Is that runny nose just a cold or the start of a pseudomonas infection?

How many people have questioned me about whether I’m really as sick as i say? How many people have said i could not have cystic fibrosis because I’m not underweight? How many times have i felt like the world is against me and no one cares?

The answer is too many to count. I feel like a prisoner in my own body and mind. It’s crazy to say, but i almost wish i could look sick just so people would believe that i really am. It’s crazy to even speak those words, but it’s true. We live in such a superficial society where if you cannot see it, it cannot possibly be true. If someone has a broken arm, they get people to sign their cast. But with invisible illness, there’s no cast. There’s no sympathy. Theres only judgement and heartache because our pain is on the inside and not the outside.

Invisible illnesses are real. And the emotional toll that they take is far worse than any of the pain we feel. So when someone tells you they are sick, believe them. Ask them more about their illness. Study it yourself. Saying “you don’t look sick!” seems like a compliment but it isn’t. It is a slap in the face and basically like you are calling them a liar. You may mean well, you may not call yourself making judgement, but you are. And the difference in “I didn’t know that, how are you doing?” And “you don’t look sick, i would have never known” could be the difference in a bad day and a good day for the person.

I have cut off the majority of my family. Why? Because i got tired of them making comments that make me feel like a liar. I have paperwork upon paperwork. Cystic fibrosis isn’t a diagnosis they give out without rock solid proof. I promise, i don’t want sympathy that bad. give me a choice in being healthy and having people feel sorry for me and i promise i will choose health. Along with that, saying i don’t look like a CF patient because of my weight is basically calling me fat. I have had over 40 rounds of steroids since 2014 from brain surgery, lung infections, and back surgery/pain. This led to a 100 lb weight gain. I have tried everything to lose weight but it doesn’t budge. Counting calories doesn’t work. Weight loss pills don’t work. Exercising is out of the question because of my back. I have almost been steroid free for a year and I’m finally starting to drop some weight.

Basically the point i want to make is to watch your words. Our parents taught us if you don’t have anything nice to say don’t say anything at all. That counts for everything. You wouldn’t go up to a cancer patient that has hair and say “oh wow you don’t look like a cancer patient because you aren’t bald”. All illnesses matter, whether invisible or visible. My back pain is just as real as your broke arm. My cystic fibrosis is real. I shouldn’t have to basically confine myself to solitary just to make sure my feelings don’t get hurt due to someone making an insensitive comment. Be kind to one another.

Maybe if i looked like the picture in the left all of the time, people would believe me. I literally debate posting things sometimes because I’m afraid of the judgment. You were just sick 2 days ago how are you ok today? Well, because chronic illness is a roller coaster. Some days your in the sky arms up and laughing, and some days your at the bottom throwing up.

More than meets the eye

My Youtube Video

Honestly, the judgement is the worst part of having chronic, invisible, rare diseases. Someone has a broken leg and a cast, everyone comes over to sign the cast, help them around, etc. But us people with chronic invisible illnesses only get judgement. People don’t care enough to research and try to understand what is wrong with us, they would rather just brush it off like we are crazy.

Want to know how many times my family has said these things? Too many to count…

“WHY DO YOU GO TO THE DOCTOR SO MUCH? if I went to the doctor as much as you I am sure he could find something wrong with me too!”

“You are way too young to be in that much pain, no way your back is as bad as you say it is”

“You need to grow up and be a mom, and stop avoiding your responsibilities. I get sick all the time and I still do what I need to do as a mom and wife.”

 

Words cut deeper than a knife sometimes. People don’t realize how much they can hurt you with just simple phrases. Even if they don’t mean to be rude, we already have so much going on and sometimes it just gets us to our breaking point. This is honestly why I avoid social settings. Whether it be family get-togethers, going to public events with other moms, or even going to hang out with my friends sometimes.

So, please, next time you see a heavy-set person in a wheelchair at the store, don’t assume they are just lazy. They may have a genetic disorder or an invisible illness you can’t see. They may have gained all the weight due to steroids, due to being inactive because of chronic pain. Next time you see that mother in line using food stamps, don’t automatically assume she is lazy and living off the government. She may have once been a thriving business woman, who got sick and now has to depend on disability to take care of her kids. What you see is only surface level, you don’t see what is going on inside of someone. That young person filling that RX for pain medicine, don’t assume they are a junkie. They may have chronic pain from an accident, injury, or maybe even a genetic reason. Just because they look young and healthy, doesn’t mean they are.

Being sick has taught me so much. Being a special needs mom has taught me so much. Be kind to one another.

 

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