Me In Pictures

I had a dream I was telling a class I was in about what I've been going through and some people were on their phones looking at picture of me and saying, "She's faking! She can stand!" This prompted me to get up to the front of the class and completely lash out on them to repeat that again if they only lived with me and witnessed my life each day. I've been able to somewhat walk 4 days in the past 3 years and I can stand for very short periods because yes I have a good left limb that I balance on when I'm up. It allows me to hop short distances to take pictures of Nia or something like that. I push my crutches/wheelchair/walker out of pictures so I can just appear normal. This is just one of many many many issues I deal with but just wanted to get that off my chest. 👍 (thumbs up)

Pleural Effusion

Soooo... mama came home from work and I was awakened from my nap by her and my dad was in the room too. 

I had a package! I thought it was easy to open but I just gave up. Mama told me she had news. I asked what it was. "Open the box first". So SHE opened my box (lol) and I had a thinking of you card/birthday card and a gift card inside from one of my grandma's friends. So nice of her :) 

Of course then, I had to ask what the news was and I didn't even read the card and note inside (I was curious, can you blame me!) 

"They know what it is!".. "What?!".. You DO have some something in you!".. "What??!!!".. "The doctor called me to say the x-ray showed a pleural effusion [around the right lung]".. "So what now?".. "You have to go to the hospital and get it drained with a needle".. "When?".. "Now". 

A pleural effusion is extra fluid around the lung. If not treated, it'd collapse my lung. And to think I would have had my doctor's appointment on Monday. It would have collapsed by then. I was just shocked about this news and that West Chester hospital had the results a day before expected and warned my doctor. I thought what's been going on was my SPS progressing for sure. 

Baby called me once I told him that it was hospital time. I wanted him to come see me down here but these are caused by a virus and babe's been sick and as we were talking, he was coughing. I kept saying "My poor sick baby" even though he's better. My dad said if he's sick it's not a good idea for him to be coming down. My mom agreed. So that bummed me. I told him I wanted to get a selfie of him next to my hospital bed and kissing my forehead. He's not into PDA but I was going to insist for memories and because he has been THE most worried about me this whole four day journey. It also made me upset because my birthday is in 2 days and I can't have my baby with me for my birthday?! He was going to take me out for a birthday with him and I tomorrow night and then be with me again for a group gathering for my birthday on Saturday. So I am upset. Not only have I not seen him for two weeks but I'm going to have a sucky 22nd birthday just like my 21st. I was supposed to speak about Stiff Person Syndrome to two classes at Miami University tomorrow but I'm not sure if that can happen due to this all now.

Anyway, we drove down to University Hospital and the wait was forever and the triage/checking in was way too slow paced. I actually got directed into the emergency-sorta room to get my vitals. I got dibs before everybody else waiting but then the triage nurse said they actually didn't have any rooms open but when one opened up, I'd get it. So we got directed back to the waiting room where I decided I wanted my mom to wheel me into this tight hallway but with waiting chairs and literally a zig zag maze with the building obstructing the hallway because I don't want all those emergency waiters' germs oh-no-no! 

We waited an hour and thirty minutes I'd say until I heard my last name called.

So yadeedah the normal doctors come in to ask when my symptoms started and where the pain was. The run down of how long this has been affecting me. Mama had told me in the car that I've dealt with this longer than others were. SPS makes me a champ when it comes to pain and procedures. 

The first doctor that came in went to find the x-ray and came back a bit later saying my pleural effusion is not like most pleural effusions. It was more on the lower end of my lung? Me being in good health other than my SPS, but being immobile, could have caused it to be this way. Also, that it may be a pulmonary embolism. I just got a CAT scan to see from a different view what's going on. It was different than the one I had a year ago or two. The warm IV contrast went all through my neck and up my arms that were up behind my head and down to my low low abdomen which was familiar. But burning from the inside out more than last time but COMPLETELY tolerable. I also felt like I was in a washing machine.. didn't recall that nor having to hold my breath nor be moved back and forth on the moveable table nor the salty taste afterwards. We have to wait an hour for the results (which now should be very soon). We left at 6 something and it's 11 now so with waiting to get in and waiting for blood work, the scan, results, etc. it's been awhile. It's going to be a longgg night.  

Baby's twin sis is just as worried and sending loving thoughts and asking for updates--just like all of you on facebook <3 I told bestie Kimmie what was going on, on the way down here and she told me what they'd have to do. I replied "Well you can tell that you are a nurse bahaha".  She was dead on what my primary had told my mom when she called her. 

But yea, the wifi here sucks and I can't get back to you lovely people but thank you for the prayers. All should be fine, but that's all I know so far. 

Also, I've had two pregnant nurses with their adorable belly bumps. One is having a girl, the other a boy. 

Also ALSO, I left my mark here.  

More pic-tchas! Always a silly trouper :o)

So bored. Beeps all around. 

Fall risk derr.!

Goodnight folks! Love you and thank you :)

Oh Miss Brittany........

I'm really behind on my blog posts--these things are always dreaded. But this one is a must and I will not flinch to make a post about it. It is the sweetest and most unexpected thing I read this morning. Left me speechless and asking my mom, "Who ARE these people?!?" I read it slowly and retained it and soaked in all the love, detail and effort put into it. When you reach purple highlighted text, you will be the utmost shocked. I still can't believe these two. REAL angels.

I went to the Drake Center this morning to get my Baclofen flow increased already--5 days post-op.

It was so cool the things I learned and experienced but I will get to that in a different post. Who knows when it will be up honestly.. with me.

First off, since the privacy settings on Facebook wouldn't allow anybody to see these four next photos but me, my mom, and Mason Dance, mama Terri Piening, bought--when we first started selling my Stiff Person Syndrome Bracelets-- $100 worth of bracelets and gave them to the dancers at Brittany's studio.

That was a huge blessing and surprise when my mom came home from work and told me this. Mama Terri, you are too much.. too kind. Enough is enough ;) But nope. She keeps giving and supporting and kept giving and supporting even before this instance. 

How?

Angel on Earth.

Last night my mom came home and I was really tired. I've been sleeping so so much after the surgery. I said I was going to go to bed early.

Well, when I woke up this morning to my mom wanting me to get up and get ready to go tot the Drake Center, I noticed my hot pink and white polka dot bag I had put a bunch of my Stiff Person Syndrome awareness bracelets in to be delivered to miss Brittany Piening was back on my bag. I saw something coming out the top of it, so I pulled it out in my dreariness, but then I felt that it had texture inside. I then knew there were pictures inside. I thought What did this girl do now?! <3 <3 <3 I saw this.

Rare Disease Day. She had surgery December 30th after she blew out her knee during Nutcracker dress rehearsal and couldn't preform for the real performances. It was heartbreaking for her and mama Terri Piening. We went to see how she was doing after her surgery.When she and I were together with some of her dance friends and some former customers of mine that I'd still be seeing if I could still work, she asked if there was a day to commemorate Stiff Person Syndrome. I talked about how, since it's so rare, Rare Disease Day was coming up. She asked what it was about and I told her commonly people wear jean to show support since the ribbon for Rare Disease Day is jeans (it's in our genes). Then she proceeded to ask what my favorite color was--purple. I could tell she had something up her sleeve and she asked if I could write something for her school with 1,800 students so they could hear over the announcements about Rare Disease Day and Stiff Person Syndrome and give donations to Brittany if they wanted. I forgot I still had a TON of my bracelets laying around so I mentioned those and that those should be distributed if someone donates $5 (since they're $5 each). So we kind of had a plan going and here is darling Brittany, sweet as can be like her mama, crippled and having missed out of a large performance at her new studio, helping and thinking about this big plan and getting super excited for helping another cripple--a disabled.

Broadcasting that they were selling these and including information about Stiff Person Syndrome on Facebook <3 Brittany and mama Terri both :D

Brittany and a group of her friends wearing purple and jeans for me on Rare Disease Day :D 

Like mother like daughter.

Speechless. 

And this precious, beautiful girl is only 14.

How? 

Angel on Earth

Oh yeah and this! For us to reserve for a foundation. 

From $5 bracelets in basically a week's time!

YES!

"GET MORE G<3<3DIES!"

We still have pink and grey bracelets, red and black UC bracelets, grey and red Ohio State bracelets, and maybe a couple lime green and white bracelets. :)

Anyway,

I asked my mom if she read it while she was at work. She said she was crying and had to put it down.

That would be my reaction if my emotions were wired like most. These things just leave me flying in the air and speechless. I cry when I'm frustrated and lost in general.

I'm cherishing this and my Piening Angels until we're all Angels together above.

And I will still love and cherish them then.

This deep love has been present for far too long. And they were just my customers once or twice!

Always here for you in return and watching you shine miss Britt.

Lovely, darling little sweet angel baby you are <3

  

With the Northern Cincinnati Youth Ballet (NCYB) girls! LOVE THEM!

Britt and I are next to each other. 

pre-op 

post-op

Juliana and Marlyna tagged onto the purple and jeans too as we established the plan this day and offered to help. 

Table of sweetie pies <3

On the rise again.

Still being the most amazing and selfless dear.

Thank you Brittany. You are my sister, my love, my heart.

Same goes to you, mama Terri.

<3

Another goofy Frisch's date soon??

:D

Nerve Block Complications

     

First off, the nerve block didn't work like how it did during the trial. We then guessed it needed the assistance of the baclofen pump to get full benefits. So that dissapointed me and I was left with a numb foot that didn't work still. 

One of my SPS friends messaged me saying that her doctor didn't want to give her a permanent nerve block because it would give her complications such as really bad pain that could not be reversed, her legs would become non functional without braces and a lot of support, and it was too risky. I replied that mine went well and I wasn't getting any pain. 

Spoke too soon.

I've been having charley horses in my calf for about a week. It hasn't been long at all since I've had my nerve block. I got if about two weeks ago. They keep getting worse and worse and curently, I'm at the point where I can't stand up or walker around without getting severe charley horses. I go to the bathroom and my leg is extended out of course since it doesn't bend and I even get them there. When I get up to flush the toilet and then wash my hands, it kicks in with full force and my short walkering distance to my room is awful. 

I was going to shower this morning, but it didn't happen because of the pain. 

I got my breakfast delivered up to me today because going downstairs and preparing my food, I didn't even want to think about it. Breakfast was the only meal I was able to prepare for myself previously. 

Not only am I having calf issues, my foot is acting up on me too. I describe the pain in my big toe as being stubbed, the arch of my foot as feeling like it's burning especially if my other foot or something else comes in contact with it, and my heel gets horrible radiating pain that lasts for about 10 seconds but then keeps returning shortly. All the while, I feel my foot muscles being pulled because my foot is still curled up. 

The worst is my calf charley horses because they happen all the time when I'm not in my bed. My foot acts up not always, but frequently.

The baclofen pump is used for pain for a lot of patients, so I am hoping so hard that it will take away these new pains. Because if not, I have no idea how I'm going to function the little amount I was able to.. let alone learn how to walk again after my tendons get lengthened and then I get my muscle memory back. 

Right when I thought I was on the rise finally, this is scaring me. Bed bound is me. The pain in my bed is dull and manageable but the moment I get out, prepare for non-stop grimacing and "owwwwww....!!!!"ing. 

For 15 months I had what we describe as a charley horse x10 in my quads, hamstring, whatever muscle is in front of your shin and goes down to the front of your foot, and Achilles. The worst time of my life by far. It was unfathomable and just complete hell. I was just lucky to not have it in my calves too. 

Well now I do. 

If the baclofen pump doesn't rid me of this pain, hang tight (literally), Kayla, for 8 months of more severe charley horses. At least the 15 months got me prepared for this but of course I don't want to go through these again.  

My mom thinks I'm getting this pain possibly because my muscles are finally moving, but they're not? 

We'll see. 

CAN'T WAIT FOR THE 27th OR FOR WHENEVER I GET MY PUMP TURNED ON.

Baclofen Pump Trial

Trial didn't go as planned.  

Started out as a 4 on the ashworth scale, tone wise, then ended and didn't even drop below 4 at any point. The nurse was able to get my knee from hyperextended to locked in neutral when I was sleepy and before my nap; sometimes this happens and 'loosens' at night right before bed. So it didn't work or kick in for any of the 6 hours at 25 micrograms.. I get manipulated into past neutral and bent degrees during physical therapy.. Did nothing for my ankle, hips, or torso either. Going back most likely next Tuesday to try again and get 75 micrograms put in and also try carbocaine, which is a trial for a nerve block, in conjunction with the Baclofen pump trial again. The carbocaine should block the nerves to my calf muscles and toe flexors to relax them.. hopefully my ankle too. The Baclofen pump will hopefully bend my other affected areas. All I know is that it failed today, my sore back switched to extreme back pain and now it's bearable after icing it. One more thing. With another trial, I am now set back 2 additional weeks for my program on top of the existing 2 week setback from taking an antibiotic. Going to have to be on it for an additional month. I'm tired of it and the crazy diet. I want to eat. I am not happy. On the plus side, the Drake Center doesn't give up on people. I'm hoping there will be something where I can bend my knee again. It's nuts.

This isn't all that happened/things we were told but it's most of it, and all I want to share. 

                      

                    

Thumbs down. No beuno. At least I have sweet people as blessings.

New Years Off To A Great Start!

Before it was even the New Year, on the 30th, Scott Osterfeld *tanget* (who works with the Butler County Board of Developmental Disabilities and we met along with his parter in awareness to schools all over the area about sharing what disability is like and in attempt to help young ones see the disabled through a new light. Her name is Jessi, she has Cerebral Palsy and this chick can't be underestimated! They both are the sweetest and do many things for the board, together and have great qualities and talents of their own). But anyway, he found the perfect 'buddy' for me.. what they call it. Her name is Kate, she is 26, from Newport, Rhode Island? (I'm horrible at remembering now), went to UK for college where she met her fiance, has a job in marketing and she happens to have Celiac Disease, so we will be able to benefit from each other's recipes! [Gluten] The point of matching me (and others in this government funded group) up with a buddy is to fit each individual up with a friend that would be a good match to get together with, do things with, and they can take you around places and spend time with you, since you are well.. disabled.

Scott, Kate, and my coordinator, Mike, all came over on the 30th so that they could introduce me to Kate and we could learn about each other and share contact information and get ideas going about what we'd like to do when we hang out. Because I said I'm so broke now, so many things I would want to do, I can't. She brought up a pottery place and I instantly lit up. I used to paint pottery all the time at Kiln' Time right by my house until it turned into several other businesses and is now the adorable little Book Bums, where I personally know the owners! I'm a creative girl, I come from an art family, and I love to paint so that is definitely on our schedule. So is watching movies at home.

Scott and I were also talking about different things we could do for the board to outreach to businesses about the Butler County Board of Developmental Disabilities, such as bring them cupcakes before their meetings to get them intrigued about us. He asked me if I'd be able to make cupcakes, and once again I lit up thinking I am the queen of cupcake making! I haven't for such a long time because it's too hard to stand for a long time, and the decorating part I am a perfectionist about, and each part completely wipes me out. But for this? You bet. So I will be back to making cupcakes this year and experimenting to make the best tasting ones and gluten free cupcakes! I told them I wanted to open up a bakery/boutique and it officially settled in that day that I was going to do it. I was at least going to open up my own bakery. The difference with my future small business? A fourth to half of what is earned goes to either the Dystonia Medical Research Foundation or I'll make a fund for my Stiff Person Syndrome. Cupcakes and pastries that give back! Giving back while buying products seems to be a trend these days. Can't say I have heard of a bakery/boutique or a bakery doing this, so I'll take a whack at it. This is where I'd incorporate Kayla's Cause. The scarves for sell and other hand made accessories and jewelry later will have a new home! Not at the Dance Bag anymore :)

Scott had came back from donating plasma that day, and asked afterwards if they had a non-profit organization he could give the money to. The person told him nobody's ever asked them that. Having my experience with IVIg treatment, needing a bunch of healthy plasma from donors, we talked about setting up something called The Plastastic Four--giving plasma for non-profit! It could easily be a philanthropy for colleges and a competition between sororities/fraternities to see who can give and raise the most.

The day before or so, Jessi had messaged a bunch of people on Facebook that she was helping to sell teddy bears for $5 for disabled children and the money goes to the Special Olympics. Pro soccer player for the Cincinnati Saints, Eddie Hertenberg, has experience with his non-profit organizations, 2 Touch Lines and Eddie's Teddies! It's explained in this link :)

http://www.youtube.com/watch?v=1a_08j2iOZA&feature=share&list=PLOAomtm2eZ7eXfShh5bf00eSGlIThTIqV

There's Eddie!

And catch Scott and Jessi dancing for a Saints goal at 5:28 haha! <3

My mom got a call this morning from Mike saying that Eddie wants to give me a $200 prepaid credit card, 4 tickets to a game, and he and several other players want to come by my house on Saturday to meet me!!! How many is "several", I don't know but whoa where did this come from! How generous and exciting!!! I instantly thought of one person and found it so weird that soccer came back into my life two ways recently.

I've been talking to this gentleman named Zach. He saw me on the dating site Plenty of Fish and messaged me on Facebook. What he had to say was so nice, so I was just being nice back but not interested. Talking more, he told me he had gone through cancer and that he's taking a treatment now so that it doesn't come back. He almost went pro in soccer until the cancer got in the way with that and ruined things. He was being scouted by the Chicago Fire team. It really hurt for him, and we both could relate to losing something we love because of an illness. Soccer and dance. He's now acting up at Columbus State University and he's excellent from a peek of a show he sent me. It's his new thing that he has taken up and is fond of now, after losing soccer. His endurance isn't the same, so that's what made him have to switch routes. We met up last week and from everything he does and says, he has a absolute heart of gold and treats me like I'm the most amazing human being. Aside from being alike in so many ways, I never ask or dream to be treated like a princess by a guy, as I am low maintenance, but he would do anything for me and is already planning on doing things for me like after Baclofen pump trial, after my surgery and when I get off my diet. Is it possible not to say no to that? It's the first time someone's heart has won me over and makes me see past the fact that they aren't my type. Never thought that would happen. So... I have a present for you now, Zach....

Come down and meet pro soccer players on Saturday with me and join me to their game whenever it is, along with Jessi and Kate? This is for you this time and your soccer passion :)

THIS JUST IN: 

Couldn't have worded that better myself ;)

Because I'm Getting A Manual Wheelchair & Plane Tickets For My Best Friend's Wedding As Christmas Presents

     *Written Saturday, December 21st*

Last night, I was asking my mama if she wanted to go to Panera with me this morning in a nonchalant manner. I had received a text from my aunt Debbie yesterday asking me if she could get mama and I to come to a surprise early get together for my mom's birthday which is on Christmas. My aunties would all be there and I thought it was the greatest idea! I loved her so much for thinking of that! I want mama to be surprised and loved and appreciated and more because all that she does for me, she deserves something for herself, something about her, and for her ..for a change. I was so excited about the plan. Everyone was going to get there before 9:00 and we were supposed to get there at 9:00.

     So last night, mama was telling me she was going to drop off a learn to tap DVD to the receptionist at her doctor's office because this lady, Debbie, wanted to give it to her niece for Christmas. She told me she wanted to get there at 8:00, before patients would be coming in. I thought 'Perfect.' So I dove in with the plan. Mama loved the idea but said we could do it a different day since I had a very eventful last two days and we had it scheduled that I would relax today and have no plans. I told her I just missed Panera and going there with her and how I love our mama daughter relaxing time we would have there and at The Originial Pancake House. She kept asking, "Are you sure?" and I would find a bunch of reasons why we (literally) needed to go.

     It was well played out by me, I must say. Normally she is always onto things I have up my sleeve but I just told her I had obviously been waking up WAY too late and needed to get back onto a normal morning schedule so that my daily homeopathic program wouldn't get all crammed, leaving me to have to stay up late to finish the daily regimen. Then I said, "Something else I can't remember made me want to go there". She asked if it was because I had given my 4 therapists at Mercy Healthplex a gift card to Panera the day before, my last therapy before Christmas. "Yes. That is exactly it. Thank you for remembering :)" When she said she didn't like the one 3 minutes from our house because there was always a burnt smell in there I thought 'Perfect!!!' again because that was not the location we were supposed to go to. She said we would have to go to the Tylersville location, 10 minutes from our house. I had a panic moment inside but showed no outward panic and said that we should go to the Deerfield location, 20 minutes from our house because (that's where her surprise was) and because there was a lot of shopping around there and just incase we needed to get any last Christmas presents. She decided that would be a good location to go to because then, she could fill up our gallon containers with more water at Whole Foods (A task that always has to be done frequently because I can only have distilled water on this program [I have to cook with it too and it's used for my teas, 3x a day as well] + I have to drink a minimum of 75 ounces of water each day.. not that that's any different from before this program because the Dantrolene that i'm on that saved my life and took me out of unimaginable severe pain from my stiffness, would kill my liver if I don't flush it with a lot of water based off the dosage I take of it. I have to get blood draws every few months to make sure it's doing okay and it has been just fine) So, it was a plan but I was secretly thinking 'You're not going to have enough time to fill them up, take me home, and then to work after your surprise that you don't know about yet!' I was so ecstatic. Things went well last night and she wasn't onto me, and I was so excited to see her reaction when she'd wheel me in to Panera and see all her sisters there for her. And I thought it was funny, little did she know, she'd be seeing two Debbies the next morning.

     I forgot to set my alarm but I knew mama would wake me, and she did. She figured I hadn't and wanted to double check that I still wanted to do this. She wanted me to keep on sleeping. I popped up and started my homeopathic regimen right away. When that was finished, I walkered to the bathroom, changed my clothes, brushed my teeth and I was ready upstairs. I hopped down the stairs, walkered to the kitchen to get one of my millet grain cinnamon raisin bagels because mama was going to get a bagel at Panera and we'd both have bagels to have together :) mine was just gluten free. She was in disbelief that I had gotten ready that fast. I drawl out my morning meds and homeopathic things since I don't want to do them and getting ready for therapy is not something I want to be doing, so I told her the latter and besides, this morning was different. Plus, I had to redeem myself to her that I could be ready faster/on time since I'm bad at that being disabled and underestimating the extra time I need to get ready. You would think being disabled for 2 years, I'd have a good grasp on that but nope. Yesterday, she was mad that I was distracted by other things and put off getting ready for the SDA Studios Nutcracker all day and she thought I was going to make us late, but we weren't :) I still needed to improve, and this morning I definitely did and made her proud. Since we keep my bagels in the freezer, they're a bit hard to slice and mama's paranoid that I'm going to cut myself when I slice them and she's faster at doing it anyway. Once she got started (I had looked at my phone when I landed downstairs and realized we were running a bit behind schedule), I kept telling her "Mama, I can do it! Go put your makeup on". Realizing I was sounding a bit weird and unnecessarily rushy, I laid off and was chill with things again. Her sisters would be able to wait for the birthday princess if it meant me not getting her clued into a surprise. I popped the slices in the toaster, mama got a bag to put it in and then she went to put her makeup on. She had my supplements already in the car, she grabbed my tea and put it in a bag with my bagel and I walkered out to the car and waited for mama to come out. While upstairs in my bathroom, I heard her leaving a voicemail for receptionist Debbie that she had the DVD she wanted to give her, so to call her back when she got a chance. When I asked her about it, she said she'd be able to drop it off after our breakfast date because she knows she always goes in early, but wasn't there to answer her call, so she'd wait for a call back or she could always drop it off on Monday. 'Good, because we don't have time for that Debbie' I was in the backseat, my back against the door, my legs stretched out on the seats.. the only way I fit in a car. I started to text my aunt Debbie that we were about to leave and were running a bit late.

     We get to Panera and we're not really late at all. A gentleman opens and holds the doors for us as mama wheels me in. I see my Aunt Debbie. I'll let the videos take over for me now.

     The parts that were missing between these videos was that I was talking to my aunt Debbie about who was expected to be coming. My mom came around from where you order and had miss Deborah Smith with her and saying, "Look who else is here!" I thought it was so cool that she happened to be there and it was so great to see her again. She offered that we come sit with her. Inside there was panic again as I thought, 'If we go elsewhere, aunties won't see where we are when they come to surprise mama.' Miss Deborah wheeled me back to her booth and on the way I whispered back to her, "My mom's being surprised by her sisters, so we may need to use this big table when they come." .. "Oh, we're having a double pow?!" We get to the booth and Avery is sitting there! After our little reunion, I said I liked the Pillow Pet beside her! It didn't even occur to me that it was sitting atop a wide American Eagle bag filled to the very top with things, reaching from the booth seat to the top of the table (and for some reason I didn't find that odd that they would have all these in Panera. I was still in my mom's surprise mindset) Then, there was just so much confusion for me as they were switching the story on me and handing me the Pillow Pet at the same time.. 

     Avery and I both had the same idea. I recorded when my mom "was being surprised" and Avery was secretly recording me when I was being surprised. Miss Deborah Smith (Coach Smith) and her daugther Avery with the Kings Dance Team pulled through for me again. They all came to the Dystance4Dystonia Cincinnati Zoo Walk in my honor as Team Kayla and then Coach Smith framed a picture of us all together and I cherish it so much. I can't wait until I can put it on the wall of wherever I live in the future. This was completely unexpected and in all, I got 6 presents from them! A Bengals Pillow Pet <3, a Lightning Cable to charge my phone (perfect because my 3rd replacement is almost too kinked to work right), a Bengals phone case!!!, A sequin Bengals hat from VS Pink, An AJ Green jersey! (finally now have a current Bengals jersey ..Ochocinco no mo!), and a Rex Burkhead autographed NFL football!!!!!!! <3 <3 <3. The Rex football pulled at my heart and I was in disbelief. I'm connected to him through my best friend Catie McKee down in Texas who has both Dystonia and auto-immune diseases just like her boo :) She went to high school with him. She texted me this summer telling me about their connection and saying he was drafted to the Bengals and I've been hyped and a sucker ever since! He signed her yearbook and he signed my football so we both have his signature :) Can't wait until he takes the reins as the main running back for the Bengals! REX! One of the dance team girl's dad is a videographer and knows all the Bengals players so that's how they got the signature! THANK YOU DOLL! 

     Mama still got an early birthday/Christmas gift from miss Deborah as well. A Starbucks gift card and a stuffed mug wrapped collection. She also got a healthy Kroger gift card that she said will pay for half of my medication next month. My aunt Debbie said she wanted to be adopted hahah :D

     Not only would mama have seen two Deborah's this morning but she would have three Deborah's!

     THAT IS, IF DOCTORS OFFICES WERE OPEN ON SATURDAYS! Lololol that went 

right past me.

     Miss Deborah knows how much of a fanatic I am of the Bengals through my statuses and how much I like Rex. She wanted to get me something for Christmas so she consulted my mama and after getting ideas and hearing the fact that I'm just getting a manual wheelchair and plane tickets for both mama and myself for my 1st best friend and main squeeze Mandie's wedding in the summer, I won't get a Christmas exactly. Coach Smith was my Santa angel and we have a HAPPY, THRILLED, SATISFIED KAYLA who does not know how to pay her or the dance team back :( They are so loving and giving that it's just too much for me to process. My mom didn't even imagine the extent that they would take this and how generous they would be! She merely gave a suggestion of a jersey. 

     Christmas, for me, is focused on giving and not so much receiving but now that the money in my bank has shrunk down so low, I can't give like I used to. I can only give by me being me for the time being. I have been wanting no presents last and this Christmas because of how much my parents have helped me out--it is so unnecessary and therefore appropriate for me to not wish for more other than an improved condition. I just know that I am so blessed and loved regardless what happens.

"You know what I miss the most? Being carefree."

- Katy A. diagnosed with cancer 2 years ago

Same.

"If only for a second"

These cancer patients were made up and put before a mirror and then opened their eyes while a photographer took a picture of them being completely carefree, surprised, full of joy and forgetting about their conditions.

That's exactly how I felt this morning.

These are the moments you treasure forever and thank God for.

     How your customers can come back and help you beyond reasonable means is over my head, but I am undoubtedly fortunate and grateful. Merry Christmas Miss Deborah, Avery, and the Kings Dance Team! May Santa be bountiful with gifts for your heartfelt and tender care and gestures this year. 

WHO DEY! 

Nia welcomed the pillow pet by sniffing under it's tail lolll. Have to sniff the butt of new friends especially when they're the same exact size as you except plumper and has the capability to un-velcro out into a pillow! Nia's my pillow anyway haha. She goes up to it parallel and kisses it's nose. Here's she's giving it perpendicular kisses :) <3 

This was all so overwhelming and exciting that it wore the heck out of me and I had to take a nap. I fell asleep at about 12 & woke up at 5:30 probably because Nia pounces up onto my bed on the regular :D Got basically a whole night's sleep from shock haha. 

Okay, I'm finally finished :) Sorry!

Diet portion of my program

Happy Thanksgiving, you turkeys! :D 

**Be sure to read my gratitude to you turkeys at the end**

Since this homeopathic program will take forever and a day to talk about and share what information my test showed, I will begin with describing what restrictions I have to my diet. I whine all the time that I can't have all this deliciousness I see all around me.. it's so hard, but I haven't cheated at all yet and it's mid week 13.. so that's power! And I refuse to cheat. Almost 8 weeks left. I've made it past Halloween (no candy candy candy), today is Thanksgiving and my lover, PUMPKIN PIE, is off limits to me. I don't know what I'm going to do..... no apple pie ala mode either..... my gosh, this torture! And yes, I've looked everywhere for a recipe that would work but they all contain something I can't have in it.

Gonna be me today. Lmao, but seriously.

I've actually been living upstairs in my room for quite a while.

1) Because rock climbing while stiff-legged up the stairs got to be too awful for me at night.

2) It's quiet up here. No stab-me-in-the-eyes-and-ears daily Russian Television or political news! Just me. And Nia when she decides to randomly come and go.

3) I don't need to walker all the way from the couch to the bathroom downstairs. I just walker the much shorter distance from my room to my bathroom now. My condition gets worse the more I move around and with the RIDICULOUS amount of times I have to get up to pee each day, it exhausts me, twists me up, stiffens me up, and the destination was too far for me when i'd just be in there for two minutes and then have to come all the very tedious way back just to get back up and repeat each hour. Plus, the bathroom downstairs doesn't have enough room for my leg to be the boner it is, so I had to open the cabinet underneath the sink to fit, nearly peeing myself every time. It's still a chore now and my bathroom is so close. And I fit in there. My walker doesn't fit in either bathroom, but my house isn't handicap accessible so what do you expect? This peeing issue will always be one of my largest program nuisances as long as I'm having to down all these liquids every day. The Pau d' Arco tea to drink 3x a day, in my belief, makes you have to pee twice per bottle. That's not even including all the water I have to drink daily + the 2 small optiflora glasses + the 2 small protein drinks. 

4) My bed is the comfiest place for me, so it's convenient that it's in my room.. obviously.

5) It's just plain easier even though I'm even more isolated now. Spend all day and night up here except for when I hop down the stairs to make and eat breakfast, and then stiff-legged rock climb back upstairs. Used to go down & up them twice a day, but now it's only once and it's still dreaded. I'm just so tired of stairs and walkering. They need to go away. 

6) When my parents eat/get normal things to eat, now I don't know and won't want to rip my hair out in jealousy while drooling over what they have ..until I open the refrigerator the next morning. Before I moved up to my room permanently again, I stared them down while eating, like Nia does for us.

Back to my extremely restrictive diet that is tailored for me:

- No yeast

- No soy

- No dairy (milk, cheese, butter, yogurt, ice cream, etc.)

- No gluten (wheat, oats, rye, barley, spelt, kamut)

- No peanuts or peanut butter

- No refined sugar (soda, cake, cookie, boxed cereals, basically everything)

- No natural or artificial sweeteners (honey, maple syrup, molasses, corn syrup, fruit juice, cane juice, rice syrup, malted sweeteners, stevia, vegetable glycerin, etc. If any sweetener is in the 1st -- 4th ingredient on the label.. can't have it. We go full in & if it's anywhere on the label, we don't get it.)

- No chocolate

- No citrus fruits

- No dried fruit

- No caffeine

- No coffee

- No MSG (monosodium glutamate, found in packaged foods and Chinese foods.. I have to be careful when dining out.. which I have done once.. at Bravo for lunch with my neighbor who is also on this program.. they have a gluten free menu [both have to avoid gluten for the program] and I got pasta with spinach, onion and grilled chicken and it was deeeeelicious! First gluten free pasta i've had.)

- No fried foods (tortilla chips count, boo)

- No hydrogenated oils

- No chlorinated or well water (can only have distilled water)

- No Alcohol

- No white potatoes

- No tomatoes

- No eggplant

- No bell pepper

Sensitivities:

- All food dyes

- Artificial flavorings

- Nitrates, nitrites, sulfates

- Chlorine

- Phenols 

(And a ton of others that aren't food related that I will address on a different update and that add more annoyances to the program) 

Limitations:

No more than 2 pieces of fruit a day

Vinegar (food products with vinegar in it, vinaigrette) ..No more than 2 tablespoons

Recommendations:

Try to eat all organic (And that, I certainly do. Everything I eat is organic)

When we tell people my limitations they ask, "So what can you eat?" At the beginning of this program, I felt like I had 2 things to choose from but now we have several options and our supply of options has increased 4x since the beginning. Pretty dang sure we've found everything out there that I'm allowed to have. It's food, so it's food, but it's still so limited and it's not like I can get this diet food whenever I want because I'm so disabled and I'm upstairs now. Plus, the preparation is a huge factor added on. Eating healthy isn't simple with prep. I wouldn't even get up when I was starving while I was downstairs--that's how much it sucks to 'walk' a few steps. On this diet, I could eat all day and it still wouldn't please me like food I would eat before this diet--and I still ate pretty healthy before this.

For breakfast, on the side, I make scrambled eggs by mixing in rice milk instead. I want to make omelettes soon with onion, kale/spinach and non-nitrate bacon mama found. My dad is a big fan of cream of wheat and oatmeal, so I grew up eating those when he would make them and when I grew up, I made them all the time. Oatmeal mostly. Old fashioned oats and on the stovetop! It kills me that I can't have oatmeal! But that's why I love warm cereal so much but cold cereal is just as yuma! Last week we found cream of buckwheat at Cincinnati Natural Foods (where we get Millet bread)! Can't wait to try that out. Of course, sugar was added to the cream of wheat all my life.. so I don't really know what it tastes like plain, but it will make do! I am IN LOVE with bananas and a medium banana (for sugar control and as instructed) each morning goes in the cereal (hot or cold) and in addition to the nana, a bunch of cinnamon goes in rice grits, quinoa and will go in the cream of buckwheat. My cold cereal is rice puffs and non-GMO corn flakes.. but the corn flakes are sweetened with pear juice concentrate, so I don't have them much. They're still the best for me than all the other ones I have looked at. Mornings where I have therapy, twice a week, my mom fries an egg and has the millet bread toasted with cashew or almond butter on the slices and has my naner for me! I like to put banana on the toast now. Veryy good stuff! Eaten very rarely are gluten free pancakes because one of the sugars is listed as the 4th ingredient. We thought it was the fifth, but we realized the mistake and I haven't had them since. Potato starch is also in many, many things including the pancakes and I have to steer away from that as well ..assumingly because I can't have potatoes. We found cinnamon raisin millet bagels at the Cincinnati Natural Foods store and since "no dried fruits" isn't in a prominent spot, I just found this out this restriction recently but they are so sparse in the bagels and it's just because dried fruits have a lot of sugar in them. Like 9 raisins won't hurt me, but I don't eat the bagels regularly whatsoever. Also very rare. I prefer to warm my belly with the warm cereal and scrambled eggs :) 

Lunch is the same 'ol, same 'ol each late afternoon but I love it! Celery boats with tons of almond butter and an apple the size of my fist (once again, for sugar control). I am literally obsessed with nut butters. Sometimes I have tuna on rice crackers with the lunch/in lieu of the apple, but I like my fruits!!! I have started making green smoothies with the Vitamix.. which requires me to go down and up the stairs twice a day again when I decide it's a smoothie day.

Dinner is mixed vegetables (corn, peas, carrots, green beans), spinach, or steamed broccoli that tastes and has the consistency of butter with the salt on it :) I'm allowed to have red meat so mama has steak bits frozen in snack baggies just ready to cook in the skillet. Sometimes I have hamburger patties on bread and we recently got organic mayo and mustard (oh yea, forgot I said literally everything I eat is organic) but it had me so beyond excited because two CONDIMENTS! Hello, condiments! I've missed you. Just can't have more than the 2 tablespoons because they have vinegar in it. So mayo and mustard on millet bread topped with a hamburger patty. Delish! Mama always got local, grass-fed, no hormones, no antibiotics beef before I was sick, so that still applies. Same with the chicken. Back when I ate quinoa more when I didn't have too many options (I don't prefer it now because it tastes blah), mama would put spinach and chicken broth in some already cooked quinoa and it was like a stir fry. She would add mixed veggies to it other times. Good chicken booby is always yum yum. A meal I have been absolutely in loveee with for weeks is crisped up corn tortillas from the toaster oven with refried beans and romaine lettuce. It has switched to baby spinach with refined beans on top of it with seasoned broken sweet potato tortilla chips.. the chips being a rare exception because technically they're fried but OH MY GOSH, I thought they were a healthy Doritos copy at first because the piece of chip I ate tasted exactly like cool ranch Doritos! They're at Costco. Go get them and boycott the GMO corn Frito Lay company.

Tastes just like cool ranch Doritos, i'm tellin' ya. Costco. Better for you.

That's another thing we make sure of. Non-GMO everythang. But yes, I can have sweet potatoes just not regular potatoes. This late summer, when my dad was grilling out, he grilled me chicken and mama sliced up sweet potatoes and sprinkled a bunch of cinnamon coating them, and then my dad grilled them. I don't like sweet potatoes but they were so good!!!! This way at least. OMG! Before I forget, mama found these gluten free chicken tenders from Perdue that are breaded with corn meal and I can have them! Just pop them into our toaster oven! And they taste like the real deal! When mama found the no-nitrate bacon, she also found no-nitrate small hotdogs for me, but they have sugar low on the list. I have a hotdog sometimes with mustard and on a piece of bread that i curl around it to make a bun to eat for dinner with veggies. I never have bacon and hotdog on the same day due to the fact they're still processed and have some sugar in them. I've already had my daily sugar with the fruit. No mo', no mo'! I have a hotdog about once a week and I rarely eat the bacon because I forget it's there, I want to say no to the pig, or simply because we've been out of it for awhile :)

Snacks are almonds. That's what I eat when I do snack because I have a little can of them in my little bedside organizer. I eat a few and then I'm good. My life's too busy to snack. Too busy with this stupid program! And therapy. And being pooped from it. And being tired all the time. And being depressed. And schoolwork. And distractions. And taking my meds. And preparing and eating meals. And other stupidness that a bed-bound girl should not be this busy.. wth? But really, Snap Pea Crisps and Pop Corners sea salt flavor are also both okay for me to eat and I could plow through a whole bag of those, especially Snap Peas, and I normally do with the Snap Peas. I never eat from them though because they are downstairs and I always forget to ask for them to be brought upstairs. No fear, mama bought me a 36 count box of little 100 calorie bags of Snap Peas for me at Costco and they're in my closet. But that requires me to get up from my bed, move my walker out of the way from my closet door, yadda yadda and get back onto my bed which isn't fun or comfortable to do with a stiff leg, NOPE! But that's the reason I can never stop eating these pea crisps. Well, yea they are freaking delicious, but what's stopping me from closing the bag? Nothing. But if it's an individual sized bag, we are GOOD folks! Oh yea, we also got an air popper for organic non-GMO kernels, and we spritz olive oil on the popcorn and sprinkle it with salt and.. yea. We haven't done that since a few times in the beginning weeks. Once again, too busy.

Q: "Is it helping you??"

A: No. I'm always about to turn into The Incredible Hulk from anger and frustration or I just want to curl up, cry forever and die. If only I could curl up into a fetal position. That would be nice, leg. Oh, right, you don't listen. But really. Who knew a person who eats as healthy as I do and gets so depressed? We think maybe my blood sugar is too low and is causing it. Normally the people with poor diets get depressed. I mean, I've been depressed this whole time. I started out depressed and now that my life is topsy turvy and disabled for two years and I can't dance anymore, I'm really depressed. But now, I'm really REALLY depressed. I need my comfort food, yo! And my condition isn't benefitting from it either so this whole torture treatment is well, that. And costly. And the fact that I can eat crap for two years and lose 33 pounds and eat a medium sized cone literally everyday trying to gain my weight back/stop losing it, when I eat healthy food is when I start packing on the pounds? I'm adverse to everything.

Things I've learned:

1) The food we eat is literally trash, and it's to blame for so many health conditions and cancers.

2) The food restriction pages came with alternatives to eat what you want, without it really being what you can't have. Too bad my diet is too strict and the replacements don't work because they contain ingredients I can't have. Take the substitute for chocolate--carob. Well carob has soy in it. Take the substitute for ice cream--Rice Dream--tastes just like ice cream. Well Rice Dream has soy in it. Soy is in everything! Sweeteners are in everything! Potato starch is in everything! 

3) Things take a lot longer to cook without a microwave. (We removed ours out of choice)

4) The holidays and January are going to suck without pumpkin pie, HOT COCOA, and candy canes.

5) I rarely drank coffee.. I drank more like drinks with coffee in them, but not being able to have the choice, I feel like I'm going to become a coffee addict when I get off this program.

6) Thought I was COMPLETELY going to go back to my old diet and eat nothing from this diet afterwards. But I'm keeping many things with me. Still going to go splurge whenever I want.

7) I never realized how DESPERATELY I alwaysssssss want PIZZA and cake until this. (Back to number 6, they have gluten free pizza and cake.. and I will order those/make them. Thought I was just going to eat regular pizza and cake all the time, but I had a change of heart. When there's normal pizza and cake.. still going at it!! Of course!)

8) Food/snack/candy/chocolate/drink advertisement commercials are TORTURE.

8) Idk. I'm sure there's more, I know I'm forgetting some but I'm tired of typing and thinking.

My lunch from Bravo. Gluten free. But then when I got home I realized it probably had soy all in so much of it, who knows where the chicken came from, and the food wasn't organic. Oh well. It was good while it was lasted. And my neighbor said that the doctor who is in charge of our programs says when you eat out, you don't have to be as cautious about little things. "You have to live," in her words. Right. "Live" on this program? No way, no how. Too restrictive. I may eat out one other time. I'm just staying as tight to this diet, plus more, to ensure I'm eating the healthiest possible and to get the best results out of it, just in case it decides to do something--unlikely.

Another thing. Thought that Chipotle would be fine to eat. A manager gave my mom an ingredient card after she ordered and purchased a bowl for me, hearing that she was ordering for her daughter with a restricted diet/restrictive ingredients. She passed it back to the backseat where I can only fit in the car, the only column that had checks was soy. And guess which of their ingredients has soy in it? Everything but the lettuce. .............. Still ate it anyway and it was so good that I wanted to cry. No more since that one occasion. And I was so depressed that night after going to the mall to get a new phone case and I saw so many things that slapped me in the face that I can't do/can't have and never thought I'd find myself in this situation. So, I deserved it that night and it brought me some happiness back.

But, it's thanksgiving today and it's actually a good holiday for my dieting. I can eat turkey, corn, green beans, spinach, and other vegetables that may be there, sweet potatoes (even though my grandma probably has cooked them with sugar and cinnamon..meaning we should bring our own yams and cinnamon maybe if I decide I want them..), I'll bring pieces of my millet bread.. maybe almond butter. But I can't have mashed potatoes or stuffing or pumpkin pie or apple pie or cranberry jello salad and all other things. So it will be good and bad at the same time.

Everybody knows Thanksgiving for food, but the real meaning is what you are thankful for and being there with your family. I'm excited that my sister is here from North Carolina and that I can be with my grandparents again as well as my parents. And we will watch the Steelers get stomped by the Ravens because we don't like either, but we ESPECIALLY don't like the Steelers. And they are 2nd in the AFC North, behind the Bengals, so they better back off. No Black Friday shopping for me or us. Just going back to comfy home and being thankful for my amazing family, best friends, fellow disabled/sick loves and my supporters. Your kind words always are appreciated and I appreciate the prayers. They both honestly mean mean tons to me. I wish they would make me feel better when I am in my moods, but only having a bendable leg and functioning without so much struggle doing everything is what would make me feel better. Not saying your comments are meaningless. I definitely hold them inside and I have an army of people who want the very same to make me happy. Just having the kindest, sweetest, most genuine supporters makes me feel so blessed and I know that I am really not alone, like how I always  feel. I may actually be, but in many of your hearts.. not in the least bit. I'm thankful most of you don't have to deal with horrible debilitating or sickening diseases/conditions and I always pray it stays that way. I hope you all have a great grubbing dinner and a fantastic time with your family. It's great to have family that is so supportive. I love my parents so much. I can't even begin to thank them. Mama helps me with everything and I have to place to live while I can't do anything or help pay for anything. The love they have for me drives their desire to help me/work overtime to keep up with the costs of having a disabled daughter plus still trying to find relief for me. The love I have for you two drives me to be speechless this Thanksgiving towards you both. I seriously can't thank you enough or find any other words than THANK YOU and I LOVE YOU. <3

Also thankful that I'm not in as much pain this Thanksgiving, since Dr. Godby came into my life in May. To Dr. Espay as well, Dr. Heuser and Logan, the people who came and donated to the Dystonia walk, my therapists at many places and the staff, thank you for working with me and trying to help my stank leg :)

One day it will be fixed/helped so I'm not stuck, miserable, and non-contributing. 

Someway or another, it will happen.       

I will be functional.

AND I CAN'T WAIT TO SPLURGE LIKE CRAZY AND EAT EVERYTHING ONCE I GET OFF THIS DIET! IT'S HAPPENING FOLKS!

Much love.