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!)