Rehab...the saga continues

Today begins the first full week in Rehab. (I wanted to call it something else but Hell is worse than this). My week began with a 4 a.m. wake up call for a blood pressure check followed by a 5 a.m. blood draw. By that time, what the heck, I'm up. So. I've been sitting here up and dressed since 6 this morning. No breakfast for me today as I'm pretty miserable with stomach pains related to the internal plumbing being completely out of whack. Another MD came in to visit this morning, so fortunately he is going to address that as well as lower my oral Prednisolone from 80mg to 60mg. Hopefully, the weight gain will start slowing down a bit. (I'm always horrified at how much weight I gain on this stuff. Now up 40 and counting. That's POUNDS folks. In ONE flipping week). I've already consumed two WARM glass of prune juice (can you say YUCK. Shows how desperate I am that I gladly slugged both glasses back like a college frat boy chugging beer through a funnel). I'm looking forward to talking to the Physical Therapist today. I want to find out how long it's going to be before they start brace fitting. I know the sooner they get the braces on and I re-learn to walk with them, the sooner I can get out of here. I completely understand that I'm going to be spending most of my time in a chair. I get it. However, I also know that it IS possible for me to spend some time walking with the help of adaptive equipment, so that's got to be my focus. I won't give in and just sit in the chair. I'll settle for walking really funny with a walker every now and then. Well, enough for now, It' pill time. More to follow later!

What? Am I EIGHT??

OK, this started yesterday at lunch. I wheeled up to the lunch counter (I would NEVER wait 40 minutes in line for this food if I had any choice). The choices for lunch were Spaghetti and mystery meat sauce, some kind of mixed veggies and grilled cheese sandwich. So, choosing the least offensive looking I chose the grilled cheese sandwich. The woman behind the counter (Flash back to every bad comedy movie you have ever seen featuring a woman serving slop behind a cafeteria counter), said, "Is that all you want"? I replied, yes it was. Well. She then proceeded to fill my plate with everything else ON TOP of the requested grilled cheese sandwich. As I wheeled myself seething to the table there were many, many things I wanted to say. Somehow I managed to keep my mouth zipped. (MY mother would have been so proud). I sat, ate my soggy grilled cheese sandwich and left the rest. Well, this morning I rolled up again for breakfast to find to my absolute horror the same woman behind the counter. This time when she asked what I wanted I simply stated, "I detest eggs and just want a muffin" (ALL the other choices were egg based). When she asked it I was sure I said YES as emphatically as I could without raising my voice. I wheeled to the table in triumph. Small muffin centered on my plate, a yoplait yogurt and banana proudly topping the tray off. As I sat at the table peeling the paper from my muffin, the elderly gentleman sitting next to me leaned over and said, "How did you pull that off? They insist on loading my plate with everything." I smiled and told him that I simply told her I don't like eggs. (I didn't want to start a revolt in the dining room by telling him the truth. Just because I'm on the other side of the counter doesn't mean I can't make a decision on my own. I'm NOT eight and have to be told what to eat.

It could be worse

The day is done, hubby is on his way back home, and I am completely exhausted. Most of the exhaustion is emotional I'm sure. Coming face to face with your limitations, especially the one's you've been trying so hard to hide and overcome, is painful. Thankfully my vision continues to improve which makes lip reading A LOT easier! Hence my communicating with the staff here is getting much easier. It was a real challenge while I was in the first hospital. I had to close my eye to try and focus on them to understand. Even wearing the cochlear implants (but their lack of effectiveness is a whole other saga). Now I can identify people with the right eye and focus. The clarity still isn't what it was, but time will tell if it will come back. I'm still on high dose oral steroids (and have an extra 30 pounds to prove it). When I get out of here I'll rest for a week, see the Opthomologist, Neurologist and head to UCLA for more treatment. I'm working on trying to set a realistic goal for myself. Yet to be determined. Right now I honestly think my goal is simply to keep my spirits up. I'm also having quite a bit of pain tonight in my back and left leg. Simply other things that make getting through all of this a challenge. I look around and honestly try to focus on the fact that it COULD be worse. This WILL pass and I am determined to come out ht other side stronger for this. However, right at this minute......all I want to do is have a good cry.

Just another day in rehab

Well, at least breakfast was hot today! Of course it was pretty tasteless so I only ate a few bites, but it's was better than nothing and it COULD have been worse. It could have been cold and tasteless! LOL This morning started off with breakfast and a rousing bout of PT. PT. Physical Torture. Where you learn not only how weak your muscles really are, but that there are true sadists in the world. They are merely called Physical Therapists. Yeah, Yeah, I know. They are really trying to help, but seriously. When the nerves don't innervate the muscle what exactly are you helping??On the positive side. I've learned a better way of getting in and out of my chair. It still feels awkward, but it's safer. My right leg in still strong, thank God, but I can barely weight bear with the left leg it's so weak. So I have to make sure that when I have to pivot to get into a bed or chair I don't have to rely of the left at all. The staff here really is great. I know they try to answer the lights as quickly as they can but I swear, each patient needs two lights. One to push for a bathroom run and one to push for everything else. I'm not waiting for the bathroom. When you gotta go, you gotta go. Fall Precautions or not I'm wheeling to the bathroom if my light isn't answered in 2 minutes. With bladder problems I can't wait and I know they are already waiting to start a cath program...no freaking way.

Something to celebrate!

I am so pleasantly shocked I can't stand it. (It's not rehab, it still sucks and as each moment passes I find out how many more limitations I have which is really hard to take). What I AM excited about is the Physiatrist treating me here in Rehab is VERY supportive about me using Dr. Rhodes' machine! He actually wrote an order for me to use it starting tonight and I am hooked up and the machine is turned on as I type. I also sent Dr. Rhodes an email requesting more protocols and changes. I KNOW his machine works and if he can get me pain free again that's enough. I found out today some ways to adapt to things I had to have help doing. With the use of gadgets I can now put my own socks and shoes on again, button my shirts and have learned a safer way to get from bed to chair. I'm still frustrated about being here. It's depressing. I never thought I'd end up a patient at a place like this. I try to stay focused by looking around me and saying to myself that it could be worse. However, at 46, it shouldn't be this bad. So, I'm having a tough time balancing the thoughts and feelings I have. I go from being so damn angry about this disease to being guilty that I don't feel I'm being a good wife to my husband. He's wonderful. He's so supportive, and the outpouring of love and support we both have received from our family, friends and Church has been nothing short of amazing. I know I'm so incredibly blessed, but right now, I'm simply incredibly angry.

This soooo sucks....

OK..so far this sucks. I woke up every two hours having to pee because of the medication they put me on. Less sleep here than in the hospital. Then, I woke up around 3 to pee once again and they had my rails up like I suddenly became an 89 year old patient with dementia. Rang the bell and was told I'm not allowed to transfer to my chair without help (HELLO I've been doing that since I got the damn thing in September) AND I'm not allowed to get dressed in the morning with out OT's help. O.K, O.K. Trying to be rational here for just a minute (before all rationality leaves for the duration of my stay). I completely get the OT dressing thing. They want to see how much help I need with adaptive equipment. Even I will admit I need some help in that area. I can also understand the wheelchair transfer, to a degree. However, my main issue, is that they didn't tell me all this crap in advance. Don't have me wake up in the middle of the night with a full bladder and have to wait on a call light when I've been getting up previously without help. When I want to get up and get dressed, don't tell me THEN I can't. Tell me this stuff the night before so I know what to expect. If you tell me what the plan of care is, I'm more than cooperative. Spring stuff of me and I'm a lot less apt to be really happy. I'm not a brain injured patient who doesn't understand. Just because my body may not cooperate doesn't mean my brain doesn't either! O.K. rant over.