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.

desperately needing pick ups & lifts.

not going to explain.

yea, so i'm not going to explain about the horrible morning/afternoon i had on march 28th. basically i had yet another patient sitting next to me that was sharing his illness with me and asking about what i have while we were getting our different treatments (like i had the week before, a girl named India with sickle cell disease). this guy was named Taurus [guess what his zodiac sign is...] and he has Gastroparesis. i had my mom take my phone to the lobby and where ever it got 3G. He leant over to me and told me he didn't want to say this with my mom around but he said i was absolutely beautiful and that he knew i was going to return to how i was before i got Stiff Person Syndrome.. he could just feel it and believed in it 100% and that he'll be praying for me. i thanked him but thought 'nobody with SPS can return to how they were before'. it was nice to hear though and i dreamt a little about it, but then just imagined my future life being all disabled because no treatments were working for me this whole process starting in 2011.

i had to stop his rambling (and i know rambling..i'm a crazy rambler on my meds but when i can see that someone looks so uncomfortable, i would stop and ask if they needed anything, if not, i'd stop talking to them. but he just kept talking) and tell him that i was tired and wanted to nap. i did feel sleepy but the main reason i told him that was because the whole time of him talking and me talking here and there, but only for 30 seconds.. i was SO awfully stiff and in SOO much pain in the reclining chair facing the window that i require because i put my foot on the wall and see if i could bend my knee. i just wanted to start bawling but then mama came back and i was beyond distressed. eventually the quiet and the white noise of the machine pumping the steroids into me got me pretty relaxed. RIGHT BEFORE THE STEROIDS WERE OVER! the machine started beeping so my nurse took the IV out, bandaged me up, and i had to get right back into my wheelchair in not a good situation at all. just had my head dropped with my hand on my forehead, crying. we had to go down down the Barrett Center to see Dr. Currie.. a neurologist and i think is my neurologist, Dr. Espay's, assistant when he is gone. he looks like my friend Shelby. he's really nice but i was getting all the vitals and stuff and waiting for him. waiting even for a short time, i just wanted to scream. 

nice but seriously, i was in so much pain.. why couldn't you see that?

had to get a picture with him of course 

and of course i put on my 

used all the time 

convincing smile that looks like i'm in no pain at all.

good thing the consultation was short. we were on our way out of the Barrett Center, but my mom had to go the the bathroom before we left. i thought 'oh, great'. once again, i wanted to scream.. i wanted to scream louder. once again, i had my head dropped, crying from the excrutiating stiffness my leg was in. you can never imagine. finally, after a long wheeling session being wheeled silent with my head down and covering my face, i was in the backseat, where i always have to lay because of my stiff limb. it's the only place i fit.. i'm just glad i'm not taller.. i fit perfectly but what if someone else crazily gets a stiff leg and can't fit in a backseat because they're taller? what then? i always told my mom.. glad i'm not my 6'5" butt of an ex with his crazy long legs. leaving the parking garage and into the light, i began crying to myself and my pain again. i was wondering if i'd ever get relief. i texted a guy i was hoping to date eventually after i would be friends with him forever, "tell me things are going to be okay." he was confused and i don't know what i replied with but he told me things would be okay. in my situation and grief and doubt that we'd ever date that made me even more depressed, i didn't believe what he said and just more crying to myself on the bumpy Clifton roads, until we reached the highway and things eased a bit and i got tired, closed my eyes, and rested.

the end.  

today was the worst morning & afternoon in a long time

I'll explain why when I want to.

What The Heckie?! BLECK!!!

UC Medical Arts Building has 8 floors with Parking 1 (where we always park) & Parking 2. I was always at floor 3—the Neuroscience floor. The Barret Center for Cancer is floor 2 (also the Orthopedic & Sports Medicine floor) I cringe every time I pass it because if I started my unknown medical journey at this location instead of at Beacon Orthopaedics (they use an ‘A’ in it..oh how fancy..NO..you don't spell Pedialyte "Paedialyte") they clearly would have seen I had neurological problem RIGHT AWAY here and set me up an appointment on the neurology floor.[F++++++++ TO HENRY STEINE AT BEACON!!! YOU ARROGANT MILITARY SARGEANT; YOU AREN’T!!! YOU LACK COMPASSION AND CONSIDERATION AND THE ABILITY TO LISTEN AND OBSERVE!!!] but to get to the Barret Center, you have to take a hallway and go through a window tunnel skywalk (“It’s called a bridge between to buildings” -Dad :’D) and then you’re in the Barret Center! Floor 6 is the genetic testing floor. Floor 1 is the Kroger pharmacy and a mini Kroger store in it. It was so cool :) Floor 4 is the IV infusion therapy floor linked to the Barret Center. Not sure what the other floors specialize in.

When we got to Floor 4 yesterday and were directed to the IV therapy door, were waiting for a bit so I started feeding my hot cocoa to all the bunnies sitting around as decorations. Bunnies love hot cocoa. I should know, because I am one. Chocolate bunnies are a no-no. I'd never eat one.. that's like cannibalism!  

I used to like that quote: 

"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain" 

UNTIL I COULDN'T DANCE ANYMORE BECAUSE OF SPS!

So now I've been waiting on both-

For some of the storm to pass & to be able to dance some again.

Finally, a nurse named Kathy came out to the lobby and what do you know? My schedule was changed. She said Dr. Lafif had consulted with Dr. Andrew McKeon, a neurologist with a speciality in auto-immune movement disorders, at Mayo Clinic ("With an alphabet behind his name" -Mama :D) ..he is a M.D., M.B., & a B.Ch. He thought that I just try three sessions of steroids this week (3/20 - 3/22) then once every week for four more weeks (last dose of steroids will be on April 18, a day before my 21st birthday) & a meeting with Dr. Latif on April 15th and if the steroids don't give me the relief, THAT is when chemo would be started in conjunction with more steroids.

From registering at the Barret Center, then going down to the first floor to check out the Kroger, then going back up the Barret Center to use the indoor many hallways (I would REFUSE to go to the hospital cafe via going outside. Way too cold and I am just skin and bones) that connect to University Hospital, when eventually you ride an elevator up two floors to the hospital. We went into the main cafe and there were doctors everywhere, seating everywhere, so many food selections and restaurant fronts built in. Mama wanted to get a latte from Starbucks & she got me a milk choco hot chocolate like she had gotten me while I admitted into the hospital last summer. Then, we had to go back down the elevators, through the long hallways again and there were many doorway metal floor seams (I had my right stiff leg & ankle propped up in the air, resting on my left bent knee) and every time he would roll me over those when we were first going to the cafe, I would get sooooo much pain that would radiate through my knee. I would say "Ow!" every time and my dad wasn't picking up on my response to each bump, so I had to tell him to go very slow over each slight metal bump. Then, things were good with the seams, but I was still EXTREMELY uncomfortable at this point from being wheeled everywhere on multiple levels and traveling multiple long hallways all like a maze with signs directing you to your destinations; just having my stiff limb hanging from me sitting in my wheelchair. I REALLY need to get a new wheelchair. My wheelchair now is collapsable and UC colors and has awesome pockets in the back, but I need a wheelchair where I can prop my leg up on a platform with edges straight in front of my right leg, so it's not hanging and giving me extreme pain and discomfort. I feel that'd be better. Not the best. Being able to bend my leg and have my ankle not twisted would be grand, but it would be better with this type of wheelchair I have in mind.

Someone, halp! Please!

So, I got set with my infusion in my arm. Saline first & eventually switching to the steroids. It took my social worker named Clair that visited me, when she saw I was coming yesterday and my mom to get my knee bent slightly. 

Better, but sucky. Trying to mock what position I get placed comfy up in my bedroom, but it was not working right because my body is all way straight on my side and I am completely laying flat in my bed. My ankle pain was excruciating. It was a 16 for awhile on the pain scale, but I have the HIGHEST pain tolerance from all of this. 

They have snacks available, so I asked mama if she could go get me some chips from the basket on the nurses counter. I was watching A Baby Story on the tv's they have connected to each reclinable patient chair and all was mostly good and distracting.

Then TLC changed to the show Extreme Couponing and starting with an expectant mother hoarding up on diapers and Gerber Graduate snacks, and everything else baby and general other stuff. Chick, this thing isn't nearly even out of your body yet and those snacks are going to go stale. I don't know--whatever. When I handed my empty bag of chips to my mom, I was saying, those started to not taste right. I was telling her I had this weird taste in my mouth, so she got me a peppermint from the counter too. It helped a little bit and nurse Kathy took my vitals and asked me to rank my pain from the scale of 0-10. It's always a 10, but since I've been dealing with this for more than a year and I'm used to it, it's about a 7. Finally, found a happy place AT THE END that was comfy in my mama's arms <3

 When I was finished with my treatment (I was sleepy at the end) I was talking to the nurses and every time I'd talk or have my mouth open I had this awful chemical taste in my mouth. It was horrible. I closed my mouth, and could still taste it, but not as bad as opening my mouth. My mom asked nurse Kathy about side effects. We knew the side effects of chemo but not steroids. She said weight gain and increased appetite. Mama asked her about having a weird taste in your mouth and said she's never heard that from anyone. I was mumbling to mama that this was going to be torture for a motor mouth--that I was going to have to be mute. I started signing and my fingers were a little too high up on my chin (touching my bottom lips), so nurse Kathy thought I was blowing her a kiss, haha, but I mumbled it was a 'thank you' and corrected my hand to sign from my chin another 'thank you'.

My dad has been sitting in the IV therapy little lobby with the bunnies, watching some show on his Kindle for 4 hours! The amazing receptionist said he was welcome to go back there as well because there were plenty of patient seats available, and next to each patient chair there were regular chairs for the patients to have a visitor, but he didn't want to intrude. I was mumbling to him, "Dad. Why didn't you? If someone needed a patient seat and though you were too close to them, you could have just gone back or found another chair to sit next to mom." And I'm young too, so it's way understandable. Then I mumbled to mama to tell him about the taste in my mouth and dad said, "It's the chemicals from the steroids! Hopefully it will go away." And it dissipated to tasting very weak on the way home.

I took a nap when I got home. Placed in the PROPER position were trying to mimic in The IV therapy room, but in my bed it never fails. Take a few minutes, but my mama is pro at getting me into a comfy position to nap or go to sleep. :) <3

I woke up a few hours later and had a text from my sissy (who has had a bug from her kids at school since Sunday and it hasn't been nice on her) asking if I was alright & I responded "Soooooo sleeeeepyy, didn't want to wake up, want to go back to sleeep!" I took my 3:00 meds a bit late and just layed in bed. I had this joyous gauze bangage over my tubes connected to the plastic thing in my vein, so it's easier on them the next day, to just connect my IV to the already prepared tube. Nurse Kathy said if it bothered me, we didn't have to do it today. And I didn't. Stupid thing. I don't get how many times I get pricked. I'm so used to so many shots and injections. It's nothing. But this thing was annoying.

Yesterday.

Today, Much better.

The positive side about that  huge bandage and this tape is that IT DOESN'T LEAVE ADHESIVE RESIDUE!!! :D I got that crap on the inside of my elbows every day of the week early this year while I was on IVIg. Nurse Carolyn said it comes right off with rubbing alcohol. Alright! So, I tried it and ended up breaking the surface of my skin, even with the rubbing alcohol each new time I got my new awesome sticky marks! THAT WAS EVEN MORE ANNOYING! I remember going through that same thing after I came home from, once again, being hospitalized last year. Took 4 days for it to come off my arm + I got this lovely moveable knot in my vein from the Ativan injections going into my tube-y thing that went into my veins and up to my brain. Ativan is a drug straight from hell to be on for long use with SPS! Hello, you're NOT welcome, you straight from hell adverse reactions! Also the vein was moveable and the whole combo just creeped me out so much & it took months and months to finally go away. 

A little later, while I was still up in my bed, I heard a knock on the door. Nia went all crazy being a yappie yorkie, like normal, running to the door & my mom and I welcomed Elder Hansen & Elder Hatch into the house. Odd, we hadn't scheduled them to come over and it was late in the day. I heard an "Oh no..." from my dad and got worried that someone died. Then I heard something about being transfered. So I go out of bed and crutched to the stairs and down them slowly to hear what was going on. Elder Hansen was being transfered somewhere else. He didn't know where, but I thanked him graciously for what he has done for my life. He wouldn't be at church anymore, obviously, but Elder Hatch would still be and they would both be matched up with different partners in their missions. Elder Hansen said he would definitely return when I make the chance to get baptized. They were very happy to hear that I wouldn't be starting chemo yet, so I will definitely be in church this Sunday and the next few Sundays at least! I can always wear those masks that hook around your ears at church, if chemo is needed. I gave them some great laughs about mixed kids and an observation I've made. For the most part, if a white chick acts ghetto and gets a ghetto guy, their kids' names will be ghetto-ish. The opposite, like my dad & my mom. If a black guy conforms to the white side and gets with a white chick, their kids' name will be normal. Elder Hansen then said Mormons spell their kids' names very uniquely. I forget what this girl's name that he said he met! It was a VERY simple name normally spelled with about 5-6 letters in it and it began with an 'A' but it had soooo many letters in it. He spelled it out for us and we were all floored. The parents literally took every part of the name an elongated it. All we can each remember is that it included a 'leigh' in it somewhere, which is 5 letters itself. If you look up baby Mormon names, you will see. But this girls name had about 12 letters in it AT LEAST. I wished Elder Hansen a very great "departual" I spewed out a new word. We all laughed and I said "I guess I was going for departure & arrival and combined them together into one." So we said a prayer at the end and Elder Hansen volunteered my dad to start it up. I told my dad to include "departual" in it and he didn't, then said "In Jesus' name we pray, Amen." So I kept my head bowed and said "And we wish Elder Hansen the most wonderful departual, In Jesus' name we pray, Amen" They laughed and continued with "What? God gave me a gift to be funny and he would love that I added that in. I'm not going to put his gifts to waste!" It was sad to see him leave, but I know God will take him to a great place where he will continue his amazing skill to project proudly and clear The Latter Day Saints word as effectively as it reached this former Atheist. They also told us, as of recently (they used to only be able to email their family) but now they can email with other people. So he told me to email him my SPS story and I said "And I can send you a picture of [insert the guy's name I'm talking to] since you won't meet him at church and since you know so much about him through Matthew (an Ambassador of our LDS church)!" While I was talking to them, I noticed the chemical taste was coming back and told my parents when they left.

Also last night, my mom ran across this post from Beth Gottlieb who posted it last night on the SPS support group on Facebook and mama read it to me.

"OK, I Just had my 4th Prednisone IV infusion, 3 in a row last week and now once a week for 6-8 weeks. My left arm was stiff since January. And last night, I was able to put on my earrings myself! I couldn't get that "arm movement" - so the infusions seem to be relieving some of the stiffness and giving me back some mobility (THANK MODERN MEDICINE AND THE ONE MOST HIGH! NOT IN THAT ORDER)... but, now I have this awful "rotten grapefruit" taste in my mouth, can't get rid of it. Anyone have any suggestions? Been drinking stuff, mints, candies... as soon as I'm done drinking the juice or the candy is gone, the horrible taste comes right back. From the Prednisone, right? HELP?!"

Laura Lammers, also a member on the SPS group, agreed "isn't that just the worst taste......I have tried everything I can think of and no luck either" 

Mama posted that I experienced that awful taste on my first high dose IV infusion. I don't know what rotten grapefruit tastes like, but that seems like a good description of it too. Just tastes like chemicals. So now I'm wondering if only people with SPS just get this awful taste, since nurse Kathy had never heard of that happening? Has anyone else experienced this horrible taste after receiving steroids for a certain reason?

But Beth's post gives me high hopes that the steroids may give me  movement in my knee and more mobility back!! Fingers crossed!! I'm just wondering what's going to become of my ankle. This afternoon, when we all got back home, mama put me in my normal bed napping/sleeping position and the muscles in the back of my leg from my ankle up to my calf hurt so bad! Like they were being stretched so much from being shortened for so long! I asked mama if it looked like my heel was closer to the wall and she said it did! I also told her, "My toes are normally the only part of my foot that contacts the wall, but it feels like the ball of my foot is also making contact with the wall." Is my heel on it's way to finally being back on the ground again after a year and 5 months?!

Today's appointment was at 8:00 AM unlike 12:30 PM like it was yesterday. We had to leave early cus we would be in rush hour traffic. When I get up every morning to get out of my bed after taking my meds, my knee has always gone stiff and it hurts sooooooo crazyyyy badddd after being bent long in my sleep, then suddenly getting all crazy locked up and continues being locked for the rest of the day. But the initial quick bent to locked up stiffness transition feeling every morning, oh buddy. NOT FUN. But that didn't happen this morning! :) And when I swung my legs over the side of my bed, my right leg stayed semi bent. I got up to see if I could get some steps in, which I couldn't, but I LOVED not feeling that awful feeling this morning!

Today's appointment was more comfortable. :) Of course we just went up the the 4th floor, on arrival, right away and once the IV therapy room was unlocked, I was one of the first two patients invited in first. We turned the chair around so I could put my feet against the wall, while sitting normal in my seat for a change. The chemical taste, I got again, but it wasn't that bad today.

   

Me all hooked up to my saline then steroids in my penguin hat today that I got last year in the winter. First time wearing it today :) Pengueen!

Tomorrow, my appointment will also be at 8:00 AM and I hope to get the same out of bed experience and be comfy again!

We are all staying prayed up & I deeply appreciate the prayers coming my way. Thank you all! :) You guys are wonderful! <3

(I apologize for any typos, I don't proof read these blog posts. Just spilling out information most of you would like to know. I'll eventually go back, probably tomorrow, and make any corrections with typos from my last two posts. They've just been so long!)