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.