Ok, it's gonna be a quick post today, but I thought I should update since I was whining about never being commented on anymore. I got a load of them after I started complaining though! Keep them coming, I get lonely here in cyber land. Today is a lovely Saturday, but it is being spent mostly on getting the room clean and ready for visitors (Dad). Later we will go out and soak up a few rays (if the weather doesn't turn on us, that is). Dad gets in tomorrow afternoon, so we must get prepared today, no matter how nice it is. All is going well medically, we went up on the Cellcept (new med) today, and we went down on the Prednisone in a way (we didn't go down, par say, but we switched from 30 mg a.m. 10 mg p.m. to 40 mg a.m. 0 mg p.m.). Well, I'd better get off and help mom with the paper work, since that's about as much help I can give right now. TTYL, my good friends!!

Now what's up with this?? Nobody loves me anymore!! I guess so, since none of you have commented. Come on, I live for the comments. It's how I stay in touch with you folks back at home! Well, not much really to comment on, now that I think about it. Life here right now is pretty boring. We haven't done a whole heck of a lot, meaning getting out and seeing the sights. Enjoying what's left of summer, ya know? We wake up, come over to the hospital for therapies, go back, and, well, kinda just do whatever. Mom's been having monster headaches the past few days, so that has kind of put a damper on the good moods. Today is a gorgeous day though, and I am waiting for mom to get done with her massage so that we can go have a nice lunch in the 80 degree weather. Hopefully we can do something outside today. I just hope this massage helps her headache. She needs some relaxation, and a break from those stupid migraines (and so do I)!!! I think I may have to sign off here, I just spilt my Skittles! =...(

Two whole blissful days of freedom!! We've been settling in over the weekend, it's been kind of slow. Trying to get the room livable for two people again. Mom spent most of her time out of the room, so space was not an issue until now. It was of course a fiasco trying to get discharged, but we finally made it. We were written down for three o'clock, but that turned into more like ten o'clock. There were these people who needed to use my room to test some equipment to assist quadriplegics (voice activation systems and stuff). They were allowed in my room from 12-1 since that was when I was out of the room (we had a meeting with someone at 2:30, so they were supposed to be gone by two). They didn't even get there until like 1:30, and by the time the meeting was supposed to start, they were still there!! Mom couldn't pack anything and the lady couldn't get to my respiratory equipment b/c those dough heads were in the way! I couldn't even fit in my own room, I had to sit out at the nurses station. Finally we had to kick them out, just so we could get in the room and learn how to work the home oxygen supplies. Not to mention we still had to pack up months worth of stuff. Speaking of, Mom deserves a huge round of applause; she hauled two wagons full of crap back and forth b/w the hospital and the Ron Don by herself, walking, 4 times! It wasn't until the fifth load that the nurse noticed mom doing it herself, and was kind enough to inform us that security was supposed to help us with that kind of thing. That made the last trip much easier, since we were able to fit both wagons and us into the van in one trip. Silly us not to think of it before though. But hey, we were later than expected, but we made it, and haven't been back since. Mornings are gonna be a little tough, though. None of us are morning people, and I have scheduled meds at 7 am (especially Sundays, cuz I have two meds, and one you have to take on an empty stomach and stay upright for at least 1/2 hour afterwards at a forty five or greater degree angle. Yuck, I know. But this med is worth it, since it's to help my bones build back up and recover. Listen, I have to go eat and take my morning cocktail, but should be back on later or tomorrow! loves to alls, kayla (and mom, of course!)

Sorry sorry sorry!!! I tried to post yesterday, but the stupid Internet was down. Now, do I have to remind anyone, or do we all remember what day it is today??? I'll let the ya'll figure it out, and if you don't know, shame on you. I've only been talking about it in nearly every post for about a month! But anyway, onward and upward. Yesterday and today there were huge accomplishes made. Yesterday I did ten minutes straight on the stationary bike, then popped right off that and did a flight of 4 stairs, up and down, TWICE!! (most importantly, there was no pain involved whatsoever!!!). Then today was the first day I got in AND out of the pool using only the stairs. It was a little tougher, and a little painful, but nowhere near enough to keep me from staying at it (and it is so much less trouble than the chair lift). Even though it won't be nearly as busy, or as structured, I still have a schedule for out patient therapies every day for the next 3 weeks (weekends off, of course) !! School is at 10-11 every day, OT is twice a week and PT is twice a week (I think), not counting Wed. pool time, which is pre scheduled. Then of course there are my outpatient clinics with the Rheumatology docs whenever they are scheduled, and I'll still be seeing an out patient psychiatrist (barf). And who could forget the famous (or do I mean infamous?) Monday/Thursday blood draw schedule. This is pretty much my plan for the next 3 weeks, then we'll redo all the evaluations and the like. I wish I could come home for the 4th, but that is highly unlikely. Maybe we can do something fun. So long as the family can be together I'm happy, but I don't know if that is possible with dad's schedule for work and everything. I'm just gonna keep praying that it's part of thwe Big Guy's scheme to have us together as a family again (and that is including my sister, who is still a part of the family, moved out and independent or not). I miss everyone so much, especially the church fam (and of course my blood relatives, and friends), but things'll get better, they already are! I have to go get ready for *gasp* another therapy, then another, and then the rest of the night will be pretty busy, but I will most definitely be on Sunday, if not tomorrow. Love to all,
Kayla

Hello hello! First off, I would like to point out only 4 more days until discharge!! It looks like it's still a go, since they are doing a sleep study on me tomorrow to find out the exact pressures I need for my C-pap (the machine they use to help my lungs expand more, so that I don't have to work so hard to breath while I sleep). They have a special person to arrange all the discharge stuff (like a shower seat, wheelchair, etc.). These are all pretty good indications that I'm still leaving. One thing we heard today kind of sent up some flags for me though, but I'll get to that in a minute. Just like every other day, I have new complaints: this morning, they sent me one of those instant carnation breakfasts. One, it was strawberry (I specifically told them no strawberry, or vanilla; strictly chocolate) two, that was ALL they sent me. They really expect me to be able to work out without keeling over, running on an instant breakfast. I know a good way to give me my protein: BRING IN THE FREAKING BACON!!! Sausage, eggs, something. I know there are tons of food that are full of protein, and they do have them here. I just have to find out where they hide them.......That was one thing. I was able to take my frustration out on the speed bag though (OK, there has been some confusion on what it is exactly, but it's like a punching bag, and it looks like the thingy in the back of your throat, the hangy bally thingy that I don't think has any significance, but whatever). Then I am whisked off to school, as usual, or so we thought. Turns out somebody forgot to change the Master Transport Schedule chart and it said I had pool every day BUT today (my PT last week swore up and down she booked it for every day this week, including today). It turned out OK though, since I got in an extra half hour of school, and I was still able to swim for about 15 minutes (they were lucky I was thinking this morning, since I put my suit on when I got dressed, knowing I would be going straight from school to the pool). Well, hopefully there won't be any schedule mix ups for tomorrow, which I don't think there will be since I don't have school. But I do have an outing, so hopefully that goes well. Only 4 more days.................can you believe it?!?!?!

I'm back, as promised. Where was I? Oh yeah, the 3rd floor mix-up. Then after that we had speed bag (here's where it got fun). The speed bag guy (his real name is Mike, he's a doctor that donated the speed bag to the hospital, and he volunteers to come in and teach anyone who wants to learn) came today and I had a blast. If you ever get a chance, I seriously recommend trying one out. They are a great way to vent, which makes it perfect for a person like me who needs a good way to vent. I got to show mom how to roll, which I think is the best technique (so far at least). But anyway, Mike said that I was the best he's ever seen (best beginner from rehab, at least). We are going to try and set up some outpatient visits too. Speaking of outpatient, it looks like this weekend still for discharge. Well, probably not this weekend, since they planned for the 22nd, but close enough. So, here's a list of all the bad things that happened today:

1. Late start, due to lack of sleep and nurses who can't figure out my schedule correctly (she woke me up at 9 instead of 8. I had a therapy at 9:30, so I was super late for that).

2. Late for school, so I missed my fav. part of the day.

3. Extremely short lunch, that got interrupted about 3 times.

4. PFTs, which are never really "fun".

5. No show for PT (bittersweet I guess).


Now let's compare it to a list of good things that have happened today:

1. I woke up, alive and knowing I am getting better.

2. I reached my goal of eight minutes non-stop on the speed bag.

3. I reached my goal of a standing shower.

4. I got Spaghettios for lunch.

I got my doctor on board to start a new med (I'll tell about it at the end).

5. I got SOME schoolwork done, which is better than nothing.

6. And tonight, we are going to do nothing but rest, since both mom and I have a little catching up to do.

Well lookie there, my good list outweighs the bad list!! About the new med; it's not really a new med. I have taken it before, but I had to come off of it cuz it was weirding out my liver functions too much. The only problem with taking me off of it is that I have nothing to control the arthritis pain now. So what we'll do is try the lower dose and pray to God it is enough to bring my pain back under control. Wish us a lot of luck with that one. Now, since I've reached not only 1, but 2 goals today (not even mentioning that they were goals set for the end of the week, and I broke past them all), I thinhk ya'll would agree I deserve a treat, huh? Huh huh? Oh mommy dearest, I love you so...............I hope it works. I think it will. I have worked a hard day today, and so has she, and we both need a little something as a reward. I have noticed that even if I say it'll be a short entry, I always manage to come up with at least 20 paragraphs of no signifigance whatsoever. Oh well, that's what friends are for, right?? OOO, looking at the time, I really gotta go. Like I said, today has been my busiest yet!!
Love Kayla

Hello everyone! Another entry of complaints, but there are some good things too. Well, the overnight pass this weekend went fairly well, but when we got back to the hospital, things got a little rocky. It turns out they don't like to start mixing the IVIG until the patient is back, and they are certain that they will be able to give it on schedule (I guess the IVIG is very expensive, and only lasts a few hours after being prepared). So we got back around 8, it didn't get started until almost 11 (it takes that long to prepare it, then 3 hours of actual infusion), and so we didn't get to bed until almost 2 in the morning. Then today we got a late start, I was running on empty, and they have me on one of the busiest schedules I've had so far. That and I always manage to get the most annoying morning nurses, so they get to face the morning bear (I was worse this moprning, from lack of sleep and pain, and I just can't tolerate them normally!) I was late getting up, so I was late for OT, which ran over and I was therefore late for school (usually I have an hourm, this time I only had about 20 minutes of work time). This also ran over, making me late for pool, then we rushed back to my room for lunch, and to see my doc since that was the only times I had open where she could see me. Then PFTs at 1:00, then PT then OT then rehab psych and now I am using up my rehab rec. time for this, so I'll let you go soon and come back after. But I guess I got a little buit of a break (even if it was accidental) since they got mixed up at where I was having my PT (she thought we had it on the 6th floor, since we usually do, but today we had speed bag so everything was scheduled for 3rd floor. Ok, I'm gonna go but I'll be back, I don't want to miss all my rec. time!!! ttfn

Hi all, short entry today. just wanted to stop in before we start our big outing, if we ever do! I know, be shocked, but there have been some complications with meds and stuff. That and I can't seem to get a hold of my mother, which is also not very convenient. So here I am, sitting all alone, bor3ed out of my mind, while I watch the sun slowly leave and be replaced by more clouds, so that as soon as I get discharged it will start tobrain. just cuz that's how my life goes. But alsas! I just got a call back from my mother, and yes, there have been complications. They shorted me one dose of one of my meds, and they sent the shot in an auto injector, which is a big no no with us. But maybe there is still enough time for a little bit of sunshine and a walk through the park ( I highly doubt the park, but hey, we can do some other fun stuff). One more thing though. Tomorrow they want to do an IVIG when I get back to my room, which involves putting in an IV. Whenever we put in a line there is always the chance of it going bad or something, so if you need something to pray about, pray it goes smoothly. I'm sure it will, but it never hurts to be extra careful, and what are prayers gonna do but help even more? thanks for listening, and I'll post tomorrow in full detail how our saop opera day turned out. Love to all, and prayers to all, thanks to all, peace out to all......

Maybe there is some hope left in the world. Today was a better day, looking at it overall. This morning started out pretty crappy, since my back was so tense I couldn't move. I had to take my Morphine, Robaxin, and TWO Oxycodones and that didn't even phase it (therefore I went into a really bad spasm). This made me late getting up, so I ate breakfast late. Oh, postpone complaining about pain, so that I can tell you how pathetic this hospital is with their food. They expect me to run on half a biscuit and Rice Krispies. Oh, can't forget that 1/4 of a banana!! But anyway, after breakfast I took my med medley. Bathroom break, then getting dressed and brushing teeth and other grooming things. By this time I am so late that it takes up my whole 1/2 hour of OT (not that that makes me very sad). Then trying to hurry and get to the gym to salvage what was left of my OT time (about 10 minutes), I go into another spasm. Then it's time for PT. By this time my back is so tight all we can do is deep tissue massage, since I can't move hardly. Then I'm whisked off to school for an hour, only to find out I have a major project I have to work on over the weekend (get this, I have to build a 3-D model of the ancient Japanese castle of Himeji, along with an essay on it's history and unique features). After this it gets a little better though. they actually gave me a whole extra hour and a half free, so we were able to eat a leisurely lunch, just me and mom (which was awesome, it was clam chowder day today!). Then mom took me for a surprise; one of our friends from CRC (clinical research center, where I went when I was on the experimental drug) had brought in her puppy so that I could see her! That definitely surprised (and pleased) me. After we played with the puppy for about half an hour we went to the art room to see what we could scrounge up for supplies to build my model (half a success, you could say. What kind of hospital doesn't have extra pieces of cardboard lying around, especially an art department!) But we did manage to find some Popsicle sticks and modeling clay, so I'[ll try and make it work. Then it was PT and OT time again, 10 minutes on the arm bike, 10 on the recumbent. I also got a really nice new butt pad for my wheelchair (to help support my back better). Oh, and the best part is when they decided to give me an arm extension thingy, ya know, the really long stick with the claw on the end to help reach things that are really high or really low (they give them to a lot of old people, and to short people too I guess). Then I came back to my room and now I'm talking on here. You have just read through a pretty thourough description of my day. It was a bummer though, no pool today. I had to ride the stupid bike instead (but Amanda, my PT on Wed.-Fri., makes it pretty fun). Another bummer is that all next week I have to get up another half hour early to get ready for my 9:30 OT sessions! I thought I made it very clear that I am not a morning person, and it was their own fault if the got the grumpy side of me by sceduling anything before 10:00. But really, it was worth. This way I can go to Ot, then school from 10:00-11:00 and pool PT from 11:00-12:00, then lunch. Then probably OT PT again, and maybe rehab psych, or rehab rec. We will try to reschedule the outing from this week to next, since it was a bust. Not much else to complain about though, come to think of it. We are going to try a few different techniques in how I sleep to see if that helps my back any. They are also having Pain Team come down and talk to us about alternative treatments, like acupuncture. Frankly, I'm not 100% sure about it, but the more my back keeps spazzing out, the more open to it I feel. Hey, if it helps, I'm open to it! I've heard from a few different people that it does wonders, my arthritis pen pal says it works great for her, so I'm thinking maybe it will for me too. Anything to get me off of these stupid pain pills, or at least get me down on the narcs a little bit. Ok, since I don't want to end on a sour note, I'll share some exciting news: WE GOT AN OVERNIGHT PASS!!!! tomorrow after my morning therapies, we're outta here and ain't coming back till Sunday night! Sure it's only across the street, but heck, better than nothing really! Well, it's four right now, so I think I'll squeeze in a little brainstorming before dinner comes. It's gonna be tough getting this model done, without all the world's resources at my fingertips (you wouldn't realize how limited your options are in this place). Much love to all!!

Well, howdy everybody. Today was another pretty stressful day, what with all of the frustrating yayhoos out there to deal with. I really cannot stand my nurse in the mornings, she is a pain in the rear (especially when I don't get much sleep and am in pain from the minute I open my eyes). How would she like it if I came into the room and started talking about things that really didn't matter? I know that sounds a little harsh, but what do you think mattered more to me at the moment, how dry my toast was or how much I needed my freaking pain meds! But after I finally told her to forget about opening my vitamins and get me some Oxycodone NOW it got a little better. Then on top of that I had Robaxin and Morphine in my system (ya think that would bring down the pain at least a tad? Nah, cuz I just don't work that way!). Then off to my stupid morning therapies. Yeah, sure, the stretching helps my back, but through how much pain am I supposed to bear it before I get any benefit? That was during OT, but PT was a little better. We got into the pool today, and we're doing it tomorrow and Friday too. That definitely helps when it comes to lowering the impact, but my hip still hurt like a mother of pearl. Then don't even get me started on dietary. The rat buggers just can't seem to figure out that their food sucks and they need to fix it. I think I'd know after having to suffer through it for 6 months, how bout you? And I know they have a lot of kids to feed, but that really shouldn't affect the quality of the food. It's the stupid system, trying to find the cheapest way out. It's also partly b/c they have me on the reduced sodium/glucose diet, cuz their regular diet ain't half bad most of the time, but the modified ones are pathetic! I had my hip X-rayed today, so we're waiting for the films to see if there are any fractures there as well. I half hope there is, just so we can pinpoint the cause of the pain, therefore we could know how to better treat it instead of relying on all these meds, and not ever knowing what the underlying problem is. I also half hope there isn't anything wrong, and we can just blame it on a really bad flare, but I highly doubt the latter (which is a major bummer). I think tomorrow will be a better day though, since I have school, and that always seems to be the most uplifting part of my day (surprise surprise). That and lunch is right after (ha ha ha ha). I can NOT wait until we can get control into our own hands when we get out of here. I'm sure everyone will be happier, not just b/c it means we're further down the road to recovery, but it will be a lot easier to be in control of everything (like the diet for instance). only 10 more days until estimated discharge date, so keep your fingers crossed it stays that way. This weekend is looking pretty good, depending on whether or not we get that overnight pass. but even if that doesn't happen, it should still be good, cuz I have my four hour passes still. Well, thank you whoever for listening to me vent, I hope you don't think too poorly of me now. It's just my patience is running a wee bit thin (and so is Mom's). I love everyone and miss you all so much. I can't wait to come hoooooome (maybe in August they say, but only for a visit). I guess it all depends on how the wind blows. We just have to roll with the punches I guess. Which reminds me, I am getting better and better on the speed bag, and it works wonders on helping with anxiety and frustration!!

Hi everyone. Not such a good day today. My back keeps getting worse, and the only thing we can do about it is bump up the pain meds. I hate going up on those things, it feels like I'm cheating by using them. I mean, I'm already on Morphine, Robaxin, Oxycodone, and Tylenol for pain. Not even all those together cuts it anymore, so they are upping the Robaxin even more (I was on 1 pill every four hours, now they are adding an extra half pill to the morning and half pill in the evening.) Even though I don't like it, I'm open to it if it'll help. I really hope it does, cuz I won't be able to go many more PT OT sessions if it gets any worse. Remember how I was going on my outing today? Exnay that little idea. I was fine during PT, but I was starting to get a little sore, so we called my nurse for some more pain meds (Oxycodone), plus I was running out of O2 in my portable tank. That was around 1:45, and I had OT right after until 2:30. The crappy part is the friggin nurse never brought my pain med, so my pain was out of control by the time I got the meds in my system. And what usually happens when pain gets out of control? It is very hard to get back under control. So me, being stupid as I am, decided to grin and bear it and try my outing anyway (stupid stupid move). I was alright until we were trying to get into the van, then WHAMMO!!! Major spasm. That was the end of our Barnes and Noble escapade, unfortunately. Since a lot of my pain is also in my hip, they are going to take an X-ray to make sure there are no fractures there too (since they seem to be everywhere else). There is one good thing about today though. We got the all clear from all the different docs to go into the pool, so that starts tomorrow. Wish me luck on getting my back figured out, cuz it looks like I'll need a few extra prayers to figure out this dilemma. With much love, I will sign off here to eat my instant spuds. =...(

Hi all. Today was a bit better than yesterday, all in all. It was definitely the busiest day of rehab so far, I didn't get done until 4:30. Usually it only goes till about two. I had ot at 10, pt at 10:30, school at 11, then I ate lunch (my next therapy wasn't until 1:30, so that gave us an extra half hour to eat lunch, which was nice). Next was pt, then at 2 I did ot. This is where it got pretty fun, though. The speedbag guy came today, and IT WAS AWSOME!!! He said I was a natural, and that he's never seen a beginner pick up the moves so fast. We are gonna get into more complicated stuff next week. Even though I am completely whooped, it was soooo worth it. Oh, and another little victory is that I can now get up from a chair by myself! Mom and I have decided that since today was the day of little victories, we could splurge and celebrate by having some..............shhhhhh.........chocolate cake!!! Now I know why they call it the sweet taste of victory.

P.S. tomorrow is my first outing with rehab rec. I will most definietly have to post and tell ya'll how it went!!

Hi all. Sorry, rehab keeps me busier than I thought, and it's the first chance I've gotten to actually sit down and think about something at a normal if not slow pace. My days start about 8:30 am, when I get up for meds and breakfast. I get ready and start O/T at 9:30-10:00, P/T at 10:00-10:30, and depending, I have either rehab psych or rehab rec. an hour of school, an hour for lunch, and then another half hour of O/T P/T. I do have the rest of the day off, and Sundays. One would hope they would give you a break, being the day of rest and all. But anyway. Everything is going fine (well, as good as it can be). We actually found out the cause of all my back problems: a small stress fracture. They are going to fit me for a brace and hopefully that will bring down the spasms and overall pain until it heals. I am so excited, tomorrow there is a therapist coming to teach me how to do more things on the speedbag (I'm really good). Then on Tuesday we are going out with rehab rec. to Barnes and Noble. They actually give me 25 dollars to spend, as part of "transitioning back into the community. Well, surprise surprise, I have to go right now but will be back to tell you how my first day off went.

Today I have a lot to say, since I haven't updated in a few days (sorry bout that). One is I have another infection. Don't worry though, we caught it in time. The treatment is either a ten day round of IV antibiotics, or an IM shot in each butt cheek. I chose the shot, but it hurt like heck. So they decided to try another antibiotic more fit for this type of infection (they thought it was E. coli, but it's something else, can't remember off the top of my beautifully bald head), and it's orally for ten days. That news is the worst I have to give you though. WE GO TO REHAB TOMORROW!!!!! I even got to choose between two rooms. It's actually really cool, the rehab unit is. The rooms aren't very big, but the bathrooms are. It has a desk, a bed, a couch, a glider chair, and shelving and cupboards for storage. Then there is also the nutrition room down the hall, and a dining room/den type place. The kitchen has an oven, a fridge, a microwave, and a toaster. The den is kind of like the dining room, but there is a seperate dining table, and a TV with comfy couch and chairs. There's also a covered outdoor patio. Well, I have to go now, we have tickets to the Mariners/Baltimore game. take me out to the ball game............................

OK, I will try and get this straight, so I don't miss-inform anyone. I got my knee MRI today, and it actually showed something. Vascular Necrosis, when the blood flow to the bone is temporarily lost, causing the bone to collapse. They don't know exactly how we're going to treat it, since I already take Fosomax to maintain my bone density (lovely steroid side effect), but they are talking about putting me on IV pulses of it. That and I am banned from climbing stairs, and they want me on crutches, which really screws everything up. Some good news is we finally got to go to the zoo today. God was definitely looking in on us today, b/c when we got to the zoo, there were 1500 kids leaving the zoo, which was more than a blessing since we had forgotten to bring any masks with us. We got some awesome pictures that I promise we will post. Turns out I lied, and dad is staying till Tuesday it looks like. I guess that's for the better though. Oh, and I don't have to check my blood sugar or do insulin anymore. They just check my glucose with my regular blood draws on Mondays and Thursdays. Well, it's Friday night, and I need to go so I can get my parents to bed across the street so I can party by myself tonight!!! Nah, I'll probably end up turning in early, catch up on the lost ZZZs from this week. Nighty-night!!