A Stumble May Prevent a Fall

SICK?

I remember staggering into the doctor’s office after 4 days of a steep decline. I couldn’t walk 10 steps without losing my breath. I was pale and yellow. I had the worst headache of my life. I told the doctor I thought I had a sinus infection. We almost didn’t even do a blood draw. I didn’t understand why I felt so bad. I thought I was just being a crybaby and I could tell my family thought so too. But on a whim, the doctor sent us next door for a blood draw. We went home and I got worse QUICKLY. Doctor called my mom the next morning and he said “Go to the emergency room, RIGHT now”. So we went. My hemogloblin (blood number, normal is 12) was 5. At this point I could not walk and I was throwing up from dizziness and headache. A tall neighbor (Ritz- thank you!) carried me down the steps and into the car.

ICU

We drove to the hospital and all I remember is covering my eyes and my ears and moaning, crying in pain. The light and sounds just made my head hurt worse. I remember a bumpy ride, lying down in the backseat with Shannon and my mom in the front. I don’t really remember much after that. It’s all in flashes. Next thing I remember, I’m lying on a bed. My mom read to me. She read this stupid book and it made me laugh, but I felt so, so terrible. We were in the ER forever. They didn’t have any room for me anywhere else. I had to pee and I wanted to get up. They helped my into a wheelchair, but the next thing I remember is me, back on the bed. I had fainted. I literally fainted because I got into a wheelchair. My hemogloblin was down to a 4, I think. I got rushed to the ICU and I remember there was a lot of loud noise, beeping, and I was SO thirsty. They wouldn’t let me have water. I got hooked up with an IV in each arm, oxygen mask, the finger heartrate monitor, blood pressure cuffs on my legs, and a catheter. My aunt was there, and she was using this sponge thing to moisten my lips but I was THIRSTY. 

THE FRIGHT

My hemoglobin went down to a 2 before I finally got my first transfusion. I apparently have a hard antibody in my blood to match, so it took a long time to get the right blood. The first transfusion was not even the right match, because I needed blood RIGHT then. I was going to to die. Actually, I’m pretty sure they all thought I was going to. I was in one of the two most critical ICU units, next to a baby who died while we were there. 

I really don’t remember much of this. I DO know we were there for a very long time. They wouldn’t let me take the oxygen mask off. They had started me with the oxygen tube, but I think my oxygen levels were so low they had to give me the mask. I was uncomfortable. Very thirsty. The catheter hurt like hell… gross I know. I also remember that the blood HURT going in. They were putting it in REALLY quickly- one transfusion over only 30 minutes (that’s fast!) it was BURNING. I remember a doctor poking his head in. I remember my mom and dad leaving and talking to the doctor. They didn’t tell me what he said but I’m pretty sure it wasn’t good. They almost took my spleen out that night.

THROUGH THE ROUGHEST PART

Luckily, I made it through the night. I had lots of transfusions (4?) and I remember waking up the next morning in the ICU…  but I felt GREAT! I sat up in bed, was talking, and my mom and I played a game. I ate breakfast and then wanted to get up and go the the restroom. They were fussing over me and I brushed it off… but I got out of bed and almost fell over. I was still very low on blood! We stayed in the ICU all day and that evening a room opened for me on the oncology/hematology floor. 

Again, my memory is really foggy around a lot of this.. Which is part of the reason I want to write it down now, before I forget even more! It’s a big part of my life. I was mostly just lying there and sleeping for the first day I think. Then I wanted stuff. Like clothes, so I didn’t have to wear a gown.. I wanted books, and my toothbrush, hairbrush, my blankets, my pillows, my phone charger, stuff like that. Shannon gathered it for me and my dad brought it to me, because my mom never left my side. I wanted board games. I thought I would have all this free time- and I did. But I still felt really, really bad. Reading was too hard for me, I couldn’t concentrate. Same with games.

MY SUPPORT NETWORK

My best friend Bethann and her mom Karen came to visit me, bringing tons of sweet things to cheer me up- like a stuffed weenie dog (she thought I might be missing mine, and she was right!) Bethann and I started to color, a LOT! Mindless, easy, way to occupy the time when you’re bedridden. Once I started feeling a little better and I could walk about 20 steps we started exploring (children’s hospital=lots of crafts and cute stuff). She would push me around in a wheelchair and we went outside and painted our nails.

My cousin Paul and his wife Kady came to visit, bringing their then-two-month-old baby boy who I love dearly. They brought us delicious food and so much happiness! Little bean brightened a dark time.

The amazing Betty Dingus and awesome Jackie made me CUTE baskets full of fun little toys and cute stuff to brighten up the day. Y’all ROCK!

My gaming friend Harold came to visit and play a game or two with me. We played a cute, easy game, but mostly it was about the wonderful company.

Cory came every single night to play Galaxy Trucker with me and my mom. They would wait when my IV pole started beeping, they pushed me in my wheelchair, they found the best table, they made me laugh. They made it bearable.

And of course throughout it all my amazing family was there: My mom was at the hospital day and night, all 10 days. I think she only left one or MAYBE two times. She slept with me in the tiny hospital bed every night and told me it would be alright. She helped me walk to the bathroom, helped me take a bath when I was strong enough, got me whatever I wanted, and just generally was amazing.

My aunt Linda and cousin Chip were there all the time. Giving Shannon a ride when she needed it, bringing us supper, and plenty of love! 

My sister was at the hospital almost every day. She and her awesome boyfriend Aiden packed up all the stuff I needed, brought me all the treats I was craving (STEROID CRAVINGS!!) and mwah mwah mwah supported me <3

My dad drove back and forth, taking care of things at home like my adorable baby dog. He took pictures of my puppy and my rabbits, and he sent them to me. He feed them and took care of them while my mom and I were gone. He came to eat dinner with my mom and support her. He also brought my Princess dog to the hospital for a visit outside once I was a little better! Thank god for dads!

CHIPMUNK CHEEKS ARRIVE

It was a long stay. And I felt awful the whole time. I was by no means better by the time I got out. I had gotten 9 blood transfusions, started an HUGE dose of steroids (120mg twice a day!), and I’d had my first dose of chemotherapy. My cheeks were already a little puffy, but nothing like what was to come.

HOME AT LAST

We went home. I still couldn’t walk up or down stairs, I was SUPER weak. My dad slept out in his studio and I slept with my mom in their kingsize bed. I was going to the clinic 3x a week but hey, at least I was at home! My family and friends continued to support me. Matt came and played a bunch of games with my sister and I and he was patient and didn’t complain about my terrible mood, puffy cheeks, fatigue, or my insatiable hunger (STEROID induced, no joke). Linda and Chip continued to visit, as did Kady, Paul, and Bean. One night, when I was in so much pain (from chemo) that we had to go to the ER, Shannon and Aiden came when I called them, all loopy on 3 doses of morphine and 2 xanax, and brought me a milkshake and laughed with me. 

Some more people that should be mentioned here: Bethaney and Imani. The sweetest girls you’ll ever meet. They live in my neighborhood and they would come over and we would talk and color. They were so, so worried about me. I love you girls so much. They would ask me if I needed anything and then fight over who got to help me. I love those chicas. 

A magnitude of other visitors came as well. Jackie and Betty continued to visit. Jackie cooked us delicious homemade vegetarian meals. Bethann and Karen were there whenever we needed them. Bethann helped me through it.

Sarah couldn’t come and visit, but she did talk to me on the phone many a night when I was in extreme pain and could not do anything else without screaming. She distracted me from the bad and we talked about anything, really. Silly fun stuff. I’m pretty sure she saved us at least an ER trip or two. 

RECOVERY-part 1

Everyone was there for me. It took lots of hard work to even get out of bed. At first, I felt like a champ if I brushed my teeth twice a day-brushing teeth was hard! Then I started feeling proud when I took a bath alone-I cannot explain how difficult it was. Little by little, I started walking around, doing some light housework… but I still got very lightheaded and short of breath, sweaty and pale when I did too much. My heart would POUND. I could tell when I needed a transfusion because I felt bad. I ended up having 12 transfusions in all. I started Cyclosporine as a long term matinence drug. We started the long steroid taper. Chemo was almost through but the side effects just kept kicking in. My hair was falling out in earest now. We cut it very short.

RECOVERY-part 2

I started going to physical therapy 3x a week. We did 5 minutes of cardio, balance, a little bit of strength stuff, and some massage. I can honestly say I don’t think I would be walking with a perfectly healthy body today if it weren’t for physical therapy. I was trying very hard to get enough sleep. I rested a lot. I tried to eat healthy. I tried to not worry. I fought. I fought hard. I had finished chemo. I was being weaned off of the steroids. I fought some more. Every day was still a battle, but it was not a war anymore. I got my PICC line out, which was how they gave me chemo and blood. I still had CRAZY chipmun cheeks, though.

RECOVERY-part 3

I finished physical therapy- the therapist said “well, we can continue, but I think you’re up to par!”. So we stopped. My hemogloblin was staying stable on Cyclosporine. I wasn’t anemic anymore, just out of shape from chemo and laying in bed for 2 months. I started mental recovery. Going through something like that changes you, and it changed me from the outside in. I am a totally different person than I used to be. I went to a therapist and we talked about my illness, and my future, and my body, and everything, really. My chipmunk cheeks were diminishing, but they were still there. I had a lot of other steroid side effects that made me feel self conscious- I gained weight, steroids give you weird stretch marks… etc. I started to work through that.

RECOVERY-part 4

This is where I consider myself today! My body feels strong and fit. It’s been almost 14 months since I got sick, and I feel 100% right now. But autoimmune diseases are chronic. I will always be at a higher risk than other people of getting another autoimmune disease, such as Lupus or Rhemutoid Arthritis. I also could have a relapse of this one at any time in my life. But right now, I’m hoping that I don’t. Positive thoughts DO help, so please, send vibes my way, pray to god, whatever your deal is. I would really appreciate it. Your thoughts become my strength.

I’ve come to accept the things that my illness gave me. Some scars (okay, a lot), and my crazy curly hair!

This illness has been a huge blessing in disguise. I don’t think you can understand the true meaning of that

phrase until you’ve gone through something like this. Before this illness, I was stuck in a bad rut. I was

depressed and still very, very broken up about my first heartbreak. Because of this illness I have realized that if

I am strong enough to beat this, I am strong enough to beat a heartbreak. I also was walking a fine line with

food. I wasn’t eating enough, and what I was eating wasn’t healthy. Because of this illness I have realized that

your body is your temple. It is the only one you’ve got. And if you treat it wrongly, then it will treat you wrongly.

If you treat your body right, it can do amazing things.

Another gift that came out of this darkness is my huge personality change. I used to be a very pessimistic, anxious, worrisome, and, truthfully, mean person (sometimes). I am not saying that this experience made me a saint. But now instead of looking at it as a 30%-40% chance of relapse, I look at it as a 60%-70% chance of recovery/longterm remission. When I start to feel anxious, I ask myself why I am feeling that way. Usually it’s due to a worry. If it’s something I can control (worried about a package that needs to be mailed, etc) then I just deal with it right then (go to the post office!) or I write it down on a list. If it’s an uncontrollable (my dog getting bit by a snake, my sister getting in a car crash, etc) then I just tell myself that I can’t change it, take 10 deep breaths, and do something that relaxes me (bath, audio visualisation, read a book, cuddle my dog…) until I don’t feel anxious anymore. If that doesn’t work, and I need help, I am not afraid to ask for help anymore. I will talk to someone. If my family and friends can’t help, then I’m not going to be afraid to talk to a professional. There is no shame in needing help.

As for being mean: I am working on it. This is something that I’m very set in my ways on. I know it’s terrible and I don’t want to hurt people’s feelings, but I’m just so snappy. I’m working on it, and I’m 10 times better than I used to be, but it’s still not okay. That’s all I have to say about this one. I’m trying.

MORE SUPPORT

A big thank you goes out to the people who supported me when I was very ill (and who continue to support me today): Mama, Daddy, Shannon, Aiden, Ritz, Cory, Bethann, Karen, Kady, Paul, David Atticus (AKA bean :D), Harold, Betty, Jackie, Bethaney, Imani, Sarah, Sarah Jane, Matt, Linda, Chip, Danielle, Ms Harkins, Kaylee, Lexi, Kyra, Aunt Morgan, Samantha, Kina, Aunt Mary, Aunt Teddy, Chelsea, Kristine V., ahren, Kesley, ZOE V., OLIVIA S., Sadie, Wila, Margie, Elizabeth Harding, Connor W., Carly, Trevor P., Alec, Tony H., Alexa, Nadine, Matthew A.C., Kate, Abbi, … AND EVERYONE ELSE!!

And a big thank you goes out to all the people who support me today but didn’t know me/didn’t know I was sick back then: Brandon, Jereme, Priscilla, Julie, Bunny, Kiki, Thunder, Shadd, Ian and EVERYONE ELSE!!

And my health people-THANK YOU: Jen, Dr. Shaffer, Cienna, Tiffany, Anna, Dr. Harrod, Dr. Reeves, Elizabeth, Linda, Jamie, Shanon, Cindy, ER nurses, ICU nurses, 4th floor nurses, Superhero Kids, EVERYONE ELSE!

And thanks to Grace Llewellyn and NBTSC for being there for me, always.