New Year, New Life and New Goals

Happy New Year, everyone!

If anyone stumbles across this who is new, hello! My name is Stephanie.

Those who followed my blog before can see, I have taken the posts that I had posted and decided to redo this all together. I just wasn’t very happy with what I was posting and really needed to figure it out. So I took down everything and tried to regroup.

Unfortunately, I had some health issues that kind of consumed my life, and I wasn’t physically, mentally or emotionally ready to start my blog back or start my YouTube. I was not happy and it would have shown on camera and in my writing. When I started this site, I told myself I was not going to get too personal. I have done that in the past, and it never went well. The fact is I can’t complain about people talking, when I am the one who gave them something to talk about, but if I want to truly do this, I have to be myself. I’m not going to do what everyone else does, only showing or talking about the good things. Fact is there are just as many bad things in life as well. It’s just that no one wants to acknowledge it, or people assume you’re having a pity party for one. They also don’t want you to bring them down, so they walk away….. you really learn who your true friends are when you are going through tough situations.

So I decided to share a little bit about my life the last few years, and be 100% honest. First off let’s go back for a second. I am a type one diabetic. I was diagnosed on September 15th, about a week after my 12th Birthday. I had been losing weight, was tired a lot, thirsty all the time, but over all I nor my parents thought too much of it. I guess maybe my body hid it well. So on the night I got really sick, we had been at the Fair all day and into the night. I knew something wasn’t right, and sure enough when I got home I fell asleep only to wake up and get sick repeatedly. Turns out I was in full DKA (Diabetic ketoacidosis) and last I remember was going back to bed and then I woke up in the ICU at Children’s Hospital. I had slipped into a coma and had been out for a couple of days. My entire family was coming to town or already there. I honestly do not remember who told me I was a diabetic and had been in a coma. I didn’t cry, I just wanted to see my mother. I later found out why my family had all come to town and why everyone was so overly emotional. Literally right before I woke up my doctor (who saved my life, and said I was the worst and closest case he had ever worked. And this man was head of the endocrinologist at Children’s) had told my parents that it was not looking good for me, and he was just about ready to put me on a ventilator. Guess that was the kick in the butt I needed to wake up, because that is how it went down. I was in the hospital for either one or two weeks, a lot of this is fuzzy. I had memory issues, vision was blurry and where I was 72 pounds I had to gain some weight back.

Here is information on Type 1 Diabetes (Also called: juvenile diabetes)
A chronic condition in which the pancreas produces little or no insulin.
More than 200,000 US cases per year
Can’t be cured, but treatment may help
Requires a medical diagnosis
Lab tests or imaging always required
Chronic: can last for years or be lifelong
It typically appears in adolescence. Symptoms include increased thirst, frequent urination, hunger, fatigue, and blurred vision. Treatment aims at maintaining normal blood sugar levels through regular monitoring, insulin therapy, diet, and exercise.

The whole time this was going on we were in the process of moving, so my cousins packed my room, and aunts and uncle helped with the house and everything. That was really hard though, because the house I was used to, the one I fell asleep in that night wasn’t the house I came home to. I didn’t know where any of my stuff was, I was not even staying in my actual room yet, because it just wasn’t ready and I had to be careful with stairs. I started gaining weight and even though I was still under or right at 100 pounds, when you have been that small and gain a little you feel huge (plus I was 12, bad timing for body issues). The biggest issue I had was with most of my family. They made it about them. Anytime I asked about what happened and them finding me unconscious, my mother would start crying (now that I am older, I do understand. She went through a parents worst nightmare. Finding your little girl lying in the floor barely breathing and won’t wake up. Plus she felt guilty, for not noticing and that is something she still deals with is the guilt).

I went weeks without breaking down until a couple weeks later, I threw my monitor and just started sobbing. My daddy pulled me on his lap and told me something I will always remember, that he knows this is hard and if he could take it away he would, he couldn’t but he knew I could handle it. My Pap was my saving grace…. he would call almost every day to talk to me, reading bible verses and telling me stories of children with cancer and if they could fight that, then I should count my blessings and could do this. It was so sweet, and so my Pap. Tough love, but in the most tender way possible. He is the reason I have never felt sorry for myself. I went through an annoyed, angry phase, just because everyone treated me like a doll about to break. After the first year I got used to it all. It still sucked, but I managed.

Now let’s go back to 2011 on Thanksgiving. Everything had been normal, we had a big family dinner with friends and then went to see Christmas lights after. When I got home that night and went to bed, I had this horrible pain on my right side under my rib cage. I later went to the ER, and they could not see anything wrong. And so began the saga of Stephanie is not an a typical person. I got so bad I basically couldn’t hardly eat, threw up daily sometimes more than once. We went to doctors and it was always the same answer. Until one day (after going through all this for six months, and still being a full time college student) I had an appointment with a nurse practitioner, who had gone through the exact same situation as I. She ended up ordering an exploratory surgery. The surgeon was an ass, and I literally never even saw him the entire day of my surgery. For all I know a monkey could have performed my surgery, and by the looks of my jagged incisions, the monkey probably would have done better work. It turns out it was my gallbladder, it had lesions all over it, and it was stuck to my liver or stomach.

Due to the surgery being on my right side, I started using my left arm and side to help me get up and down while recovering. I knew my left shoulder had been bothering me here and there. I did cheerleading for seven years, five of which were competitive. Sometimes my back and left shoulder would hurt, but it never stayed. That is, until gradually as I recovered from my surgery. I finally told my doctor about it and was sent to an orthopedic, who did one X-ray and said I was too young to have any shoulder problems……. I call bullshit.

We tried another orthopedic here, but ultimately it was a similar outcome. That is when we decided to drive the three hours to Nashville (which is where I lived for three years when I was little and where my Pap, uncle, aunt and cousins lived) and so we would stay at my Pap’s house. Trip after trip, still nothing. While all that was going on I also had been having some other health issues. I had a close call before all the Nashville trips…..

I guess I will throw that little story in here too….. (If you read this, you are a real pal and get a doughnut). My mother and our very close family friend, who is like my second mother…. decided we would go stay at this creepy supposedly “haunted” bed and breakfast, even got to book the most haunted room, that a little girl name “Sarah” claims.

Ghost Child Sarah’s Creepy Doll In The Most Haunted Room

We were all excited, even though my mother and I do not believe in ghosts (I really want too!) my Pap and Mamaw always did, and so did my daddy. When we left I was really feeling sick, so we stopped and got food thinking I just needed something to eat. I ended up not being able to eat, and about 20 minutes away from the bed and breakfast, I got sick. Then it progressed through the whole night. I was able to still take part in some of the event, but not much. So i stayed in the room haunted by little Sarah….. the fun part of being sick (if there ever were a fun part to puking your guts out and dry heaving) is when I had managed to come down and listen to the history of Sarah, they said she had died from some illness with her stomach, and was very ill. So then I knew, these people will think I am possessed by Sarah’s ghost. Gotta find entertainment in your agony, right? I ended up getting even worse, and as a diabetic once you get a stomach bug, you can easily go into DKA (diabetic ketoacidosis) and of course that is exactly what happened, and way quicker than normal. I went to this middle of nowhere hospital as soon as it was light outside. Thankfully they had a doctor there from Vanderbilt Hospital, and she took one look at me and said to get the ambulance. I was heading to Nashville, on a two lane street in standstill traffic. So they had the sirens blaring and ended up going off road, around all the cars (we lost my momma who was following behind, she had to wait out the traffic). It was actually really fun and exciting. I got there in less than forty minutes, even beat my aunt there who was coming to stay with me until momma got there. We had to leave our family friend at small town middle of nowhere hospital, and she was able to get a ride home. While there they noticed my heart rate was really high, and blood pressure was really low. I wasn’t responding as well to the treatment and my labs were crazy. The doctor suspected I had a thyroid problem or something autoimmune related. He was right! Not the thyroid, at least we don’t think so…. knowing me, anything is possible.

I am still not completely sure, we really think it could be Lupus, but some of those tests were fine, and some were abnormal. As of now I take medication to help keep my heart rate low (I have an overactive heart, apparently) and am trying to manage my anxiety and panic attacks (something I have always had, but has gotten so much worse these last few years).

So back to the shoulder, I ended up finding out it has definitely been dislocated at some point, and that is why it comes in and out of place (which is so painful it about sends me into a screaming fit), then I had an MRI with contrast and finally it shown a small tear in my rotator cuff. But before we went through with any surgery he wanted me to see a specialist to make sure my neck or back were not part of it. So I did and he ended up giving me a huge numbing shot, and I told him not to give me any steroids because that makes my blood sugar high. He didn’t listen did it anyway, and then went in blind. I believe this could of been the trigger and source, to what I am currently going through.

I ended up having the shoulder surgery August 4th. It was bursitis. … Severe loss of motion in the shoulder, and is extremely painful. He cleaned up the small tear and removed my bursa. I stayed in a hotel for over a week and got super sick from pain the second day, then on the fourth day I had post op and our SUV broke down on the interstate (that is why my stay was so long, had to get the truck fixed and reschedule post op).

Once I went home I started going to physical therapy, and couldn’t stand it, the tens unit was horrible, I didn’t want to be touched, my shoulder stayed blood red and hot constantly. It was actually my therapist that told me she suspected I had RSD (or also known as CRPS, Complex regional pain syndrome)

Information on it:
Fewer than 200,000 US cases per year

Can’t be cured, but treatment may help

Requires a medical diagnosis

Lab tests or imaging not required

Chronic: can last for years or be lifelong
The exact cause of complex regional pain syndrome isn’t well understood but may involve abnormal inflammation or nerve dysfunction. Complex regional pain is characterized by pain that is greater than would be expected from the injury that causes it. Treatment usually consists of medications, heat or cold therapy, physical therapy, and biofeedback.

I see a rheumatologist, cardiologist, an anesthesiology/pain management doctor, Doctor Stephanie, she is awesome and does my nerve blocks. She is very well educated on RSD/CRPS and we are really making some great progress. my last visit, (I go every month) they said I was gaining some strength in my bad arm and hand (the RSD sends this nerve pain and twitches to my arm and into my fingers when its really flaring up), so to hear that was awesome!
My rheumatologist said (who I see every three months) the other day, that I seemed to be doing better and I looked like I was feeling better. So once again, promising news.

I get nerve blocks for the RSD, and I have seen some improvement. I have my next nerve block on the 1st of February. They are extremely painful and it usually takes me a few days to recover, but if it could send me into remission then it is worth it. I have been dealing with this shoulder pain for years now, and have let it consume my day to day life, but I am fighting through it and making changes. I will very soon be seeing a physical therapist to tack on to my list of appointments and specialists.

I am in the process of looking for a job to start saving for a good dependable car. I also am planning on moving into mine and my boyfriend’s own place, once we have enough money saved up. We will have been together for seven years this year, so this is not a sudden rash decision. I started looking into renting and houses, condos, apartments, etc when I was barely 18, so at 25 I am so ready to get my own place. I want to go back to school too. I am just a few classes away from graduating, so that will happen eventually….. I am so not a quitter. My really big goal is to workout, do my physical therapy, and get my body toned again, but mostly just to be healthy.

As far as my anxiety and panic attacks go, I am handling them one day at a time. I have gotten better about handling them, but it’s never easy. I wish I could give advice on this topic, but everyone’s anxiety, depression and panic attacks are different and totally your own. Just know that you are not alone, and breathe, but most importantly do not be ashamed or embarrassed, or let anyone belittle you. That goes for everything and is the biggest lesson I have learned in life so far.

This isn’t a sob story either, I am actually (as crazy as it sounds), very grateful that I have had all of these issues. I have grown so much in the last five year, and am the truest version of myself that I can be. I was also able to spend more time with my Pap, before he passed away on March 16th 2014 from an aortic aneurysm, it was so sudden. Thankfully I was able to see him, hug him and sit on his lap like a little girl….. and I brought my younger cousin Hannah to see him too. So that is something I will hold in my heart forever. I miss and think of him daily. I went to school the week after his death, and ended up getting an A in that class even with everything going on. Two weeks later I went to Nashville for another doctors appointment. I had a little breakdown, but other than that I didn’t let myself cry. I even demanded I go to his house, I just needed to see that he truly wasn’t there, and I guess try to stir up some sort of emotion, grief is a strange thing. I thought I knew what pain was when my Mamaw died, but I was really young. Then when My dog, Patches an Australian Shepherd/Husky mix passed away on Christmas of 2012 week before I found out I had diabetes, and was told even as a little puppy, she barked at the paramedics and wouldn’t let them in my room), but with Pap, it was just unbearable.
I am not telling this for sympathy or to make anyone sad, or think I am attention seeking, (and if they think that then “quite frankly my dear, I don’t give a damn” (If you know where that is from, you get a second doughnut and pal status). I am writing all of this as a symbol of finding inner strength, even when you think you are broken. Everyone has something in their lives that they are going through and sometimes it is easy to focus on just your issues, but try to get out of that mindset and think “okay, I could be worse off”. It will totally change how you handle whatever you have going on.

I hope this wasn’t completely boring, I know it is very long, but I had to go back and tell some back story, so other topics would make sense. I don’t really plan on talking much more about my health stuff, just because I don’t want it to consume me anymore, and it’s personal. Putting this out here is huge for me and very vulnerable. I went years without even telling people I was a diabetic, so to tell all of my history (health wise that is), is a little overwhelming. I just hope if anyone else is going through something, that you know that you are not alone. People just show what they want you to see, not the hard truth that life isn’t perfect, it is perfectly imperfect.

-Stephanie Noelle

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