YOU CAN DO IT

August 2008 my high school principal called me into his office. I was going into tenth grade(I was a year behind bc of moving so much). I finished 9th grade with a 4.0, even though I missed 90 days of school that year from being sick. He sat mom and I down and told us he wanted to give me a test. I took it, and I scored 12.9 (12th grade 9 month AKA graduating senior). He called us back in and told me I didn’t need to go back to school, I could just go to GED classes and take the GED when I turned 17 in January then go on to college. So I went to the GED center the next day. They gave me a ton of tests. The head of the GED department called me into his office. He said that I scored so high there was nothing they could do for me as far as classes, that I was more than ready to take the GED. He then called the HEAD of the MS GED department and told him about me. I got the special approval to take my GED a month before I turned 17. I was the youngest person in MS to ever take the GED. When I got my GED, most of my family said I would never go to college let along finish (especially when I got pregnant). I was the first of my siblings to ever go to college let along graduate. One of my cousins told me I would never get anywhere with a GED because people frowned upon them and it was like dropping out basically.

I started college 2 weeks before my 17th birthday January 5, 2009. My whole family lived in McComb, and I moved to Ellisville to attend Jones. I knew no-one in a 90-mile range, and I lived in a dorm, worked full time as a dorm RA, on top of being enrolled in 18 credits fresh out of the 9th grade. I had some amazing “suities” (Caroline, Jill, Lauren and Leah) who looked out for me daily because I was the dorm baby. I took the ACT the next month, with having only ever had algebra 1 and honors English 1. I made a 23 my first time taking the test. I worked night shift at the dorms, went to class from 8-1, then came back to the dorms and studied. While most 17 years old were going to prom, homecoming, having fun, I was in college.

February 5, 2009, I got a message from a sweet guy. He wrote a book about himself telling me things. I had a bad experience on the dating site in the past, so I ignored it for a day or two. I went back to close my account and figured I would at least give him a chance. (Spoiler alert, he’s my husband now.) I moved out of the dorms in March to Hattiesburg in a house with Sara, Jill, and Karalee. I drove 30 miles to class every day.

May 4, 2009 my life changed forever. I went in for a simple sinus surgery, but the anesthesia doctor came in and said we can’t do your surgery. I said why not? He said because you are pregnant. I was shocked. My mind immediately went to school. HOW was I going to do this? I finished the first semester of college with a 3.5 GPA, but I wasn’t able to go anymore because of pregnancy complications. I did not return to college until 2013, 4 years later. I was raising a special needs child all while going to college in class Monday through Friday.

FINALLY, in 2017 4 years later I got my associates degree with honors. And now 2 years later in 2019 I am receiving my bachelor’s degree. Not only receiving it, but with honors on my transcript.

I have gone to 4 different colleges since 2013. Had to change programs 3 times because one school didn’t offer what the other did, and most of the classes didn’t transfer. Finally, we settled in Pensacola and I started PSC in 2015.

I have written papers on the road to UAB, I have taken finals from hospital beds. I took a midterm 2 days after having brain surgery. Took a final in pre-term labor with Aubree. I just got done writing a 4-page APA style paper after a month of being in and out of the hospital and coughing up a storm.

Basically, I say all of this to make a point. No matter what life throws at you, no matter how long you are out of school, you can go back. You can finish. No matter if no-one in your family has went to college. No matter if you have health issues. No matter if you have kids, move around a lot, or just scared you aren’t smart enough. You can do it.

“Never let the fear of striking out, keep you from playing the game”

UAB trip

Man, oh man. The past 3 days have been a whirlwind of emotions. I originally expected to be going home today, but that didn’t happen.

Tuesday morning, we left at 7 am. Got into town, ran to Target to get a few groceries, then checked into the hotel. I then rode the shuttle to my appointment with my ENT. He said my nose actually looks okay except for a little bit of what looked like pseudomonas (culture should be back tomorrow). Cleaned it out a little and sent me on my way. We went to bed at 7 PM and slept until Wednesday morning at 8 am.

Wednesday I ate breakfast and went back to the clinics for my CF appt. Met my new pulmonologist. He was okay, but he still refuses to give me that official CF stamp because of no genes. It’s very frustrating, because the sweat test is supposed to be the gold standard and I’ve had THREE. He said, “well two of them were borderline”. No. One was 70, one was 80 and one was 81. Those are POSITIVE. I had blood in my sputum for the first time ever, and my lung function was down a good bit. They gave me by mouth antibiotics and if I don’t feel better by 2 weeks I will have to be admitted. They cultured the sputum and did the yearly bloodwork + the pancreas stool sample. 8 tubes of blood later and we were on our way to the Pulmonology surgeon for my TBM.

We waited for an hour to finally see him, but it was worth it. HE said I do have collapse, but he wanted to repeat bronchoscope. Hence why we had to stay an extra day because the bronch was this morning.

Got up at 6 am, was at hospital at 7. It took SIX tries and I was literally laying on the procedure table being stuck trying to get an IV so we could start the bronch. I got really choked and had a panic attack on the table, so they had to give me extra sedation. Woke up in recovery and came back to the hotel. Slept most of the day. Bronch showed mild collapse so for now he just wants to watch it.

While I was asleep my phone rang. I answered and thank God I did. It was Vanderbilt Undiagnosed Disease Network. I told them how my CF center was treating me not saying I officially have CF and she said they are crazy. That every sign they have points to Cf diagnosis. They said the sweat test being positive plus my clinical symptoms all point to Cf and they are 99.9% sure that I do have CF. My genes are just going to be rare. They actually sent my file to John Hopkins because they have similar patient with genes of interest like mine are. So, fingers crossed we find out my exact genes ASAP.

I am SO ready to be home, so ready to sleep in my own bed and get halfway back to normal. It has been an exhausting trip physically mentally and emotionally.

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

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.

Where to begin……

With great knowledge comes great power, or something like that right?

Hi to everyone out there that does not know who I am. Let me introduce myself.

My name is Tori Greene. I am 26 years old, originally from a small town in Mississippi. now living in Florida. I have two children. Bentley is 8, and has autism. Aubree is going to be 4 next week, and we are in the process of a diagnosis for her as well. I’m sure you are wondering why I would name my page “This Rare Mama”, right. No, its not because I’m a rare kind of mom, its because I am navigating my life as a mom, that just happens to have rare genetic conditions.

I’ve been sick as long as I can remember. Every birthday, Christmas, or Tuesday was spent in the pediatricians office with a fever and sickness. I’m pretty sure my medical bills paid for the new building they are in now, and my pediatricians huge mansion.

Both of my pregnancies were horrible to say the least. Sickness, contractions the whole time, miserable. I am the exception to the saying “pregnancy is a beautiful wonderful time”. Sure, if by beautiful wonderful you mean spending everyday hovered over a toilet for 9 months and in a hospital bed tied to monitors that the baby is fiercely trying to kick off”. I love my babies and I would not trade them for the world. When people say “you are so young to have had a hysterectomy. Didn’t you want more kids?”, I literally look at them and laugh. My children are my greatest blessing and believe me I understand who lucky I was to even carry one let along two, but if you knew me while I was pregnant you would be thankful that I cannot bare a child again. (I am pretty sure I’m the reason my OBGYN with my daughter had to quit due to “mental health reasons”, just saying.)

Anywho, back to my rare genetic conditions. As a child, doctors never thought to refer me out until I was a teenager. I tested “borderline” for cystic fibrosis through sweat test, but they never looked any further apparently. As a teenager, I would be sick and no-one believed me! They all thought I was just faking it to get out of school. I mean to be fair I probably 10% was hoping to miss school anyway, but I was legitimately sick. We all chalked it up to me having a low immune system and thats as far as it went…..

Flash forward to 2014. After having my daughter, I started having bad dizzy spells. Her crying would send me spinning, and I could not get off the couch. They did a CT of my head, and found SCDS (Semicircular Canal Dehiscence). So, we headed up to Vanderbilt and I had a MFC (Middle Fossa Craniotomy), and 8 hours later I woke up vertigo-free. May of 2015, I had such a bad period my blood dropped to 5. Which led to an emergency hysterectomy, pneumonia, and 2 pints of blood. Finally got recovered from that, then came the gallbladder emergency surgery. Thought I was going to finally get a break, boy was I wrong. I was jumping on a trampoline at an indoor park with my kids and bam, it hit me. No, not a bus. A numbness down my legs and back, with excruciating pain. 2 bulging disc and nerve impingement. Discectomy/Laminectomy October 2016 and I was all better. Praying that I would finally get some relief and be able to be normal (or at least semi-normal), and then started the intense and constant lung/sinus problems even more-so than normal.

Flash forward to June 2017, we finally settle down in Pensacola and I find an ENT. He does a scan and asks have I ever been told I have CF. Nope, they said it was borderline but that meant negative and dropped it. His response was shocked, and that he wanted me to see a specialist. October 2017 I visited UAB to see the specialist. Sure enough, positive sweat test and referral to the CF clinic. Blood work on blood work on blood work. Visit with the CF clinic showed my PFT (Pulmonary Function Tests) were low and I needed to be hospitalized. They did genetic testing for 300 CF genes that are common, all were negative. And that was the end of the CF clinic road at UAB. They dropped me like a hot potato and never looked back. Went to an immunology doctor, she did a workup for Hyper IGE syndrome. Negative. However it did return 6 single copy mutations.

So, basically I am now in progress to be a candidate for the Undiagnosed Genetic Disease program. I see a geneticist at Vanderbilt who is 99.9% sure I have a rare form of Cystic Fibrosis that hasn’t been discovered or named yet.

So now you are all caught up. Basically, I’m a lab rat waiting to be researched. When I tell people I am one in a million and they laugh, they don’t understand I mean that quite literally….

This blog is going to be a place for me to vent, to ask advice/give advice, to tell my jokes, to make videos both informative and funny,and to document my journey. According to the internet, 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. That weird thing you have that you just think is a unique quirk, may just be a rare disease. So this facebook is going to help me better connect with the world around me, and maybe just maybe, put a ribbon on top of the box that is labeled diagnosis. I also want to help promote AWARENESS, INCLUSION, and ACCEPTANCE of those with chronic illness, chronic pain, rare diseases, and even those well known invisible or visible disorders.

If you can do anything in this world for someone, be kind to one another- Ellen.