The home health company stopped by today to admit me to their care and set up nursing and physical therapist visits. She asked me a bunch of crazy questions, did the vitals thing and gave me a bunch of paperwork.
Then she tells me, "Since you are homebound, something, something, something." I didn't hear anything after homebound. I guess it was just a word game...Technically, I couldn't drive or walk without assistance. I was stuck at home. I guess that makes me homebound. It was just weird to hear it. But hopefully it was only for a couple of weeks.
The nurse's best friend has MS. I have friends that have MS and it seems that a lot of people know someone with it. Which makes it all the more frustrating when no one can predict the course the disease will take. Everyone seems to start out with a different set of symptoms and there really isn't one treatment course that works. Everything I read says not to compare yourself with anyone else.
Leave it to me to get something difficult.
Friday, May 14, 2010
Home...a new kind of captivity
After 5 days away, it was wonderful to be back in my own house. Just that made my mood 10 times better. My cats were afraid of my walker, though, and seemed not too happy that I deserted them for so long.
That whole story about me staying on 1 floor just was not going to work. I was going to sleep in my own bed and use the regular bathroom! Kat stayed with me for most of the day and offered to spend the night, and as much fun as a slumber party is, this was something I had to prove to myself that I could do. And I did. I slowly made my way up to my bedroom.
What a glorious night of sleep it was! Until 6AM when I stuck my arm out for my finger stick. Thank goodness is was a dream and I was able to go back to sleep.
I was going to try to get a few things done around my house. Cleaning, mainly. I didn't want to be embarrassed if people came over. And since I still couldn't drive, I was going to need some human contact. It's weird, the fatigue that comes with MS. I would be fine straightening up a few things then I would have to sit down. Now this is what I used to do when cleaning, but that was just because I felt like it! Now my body makes me.
I started thinking about my "plans" for this year. I had planned on being careful with my money so I could pay off some bills and do some renovations on my house. I wasn't going to take a lot of time off of work. I really wanted to be committed to all of this. And the thing I wanted more than anything was to get promoted to Specialist.
I'll tell you something....you may make plans, but God's plan for your life will always trump what you want. He knows best... I could almost hear him saying "Mary, Mary, Mary....Let's try my plan instead." What choice do I really have? I can learn to really, really trust him, or curl up in a fetal position and feel sorry for myself.
I'm going to have to go with the trust thing. Crying gives me a big headache, and let's face it, my brain has enough problems as it is.
That whole story about me staying on 1 floor just was not going to work. I was going to sleep in my own bed and use the regular bathroom! Kat stayed with me for most of the day and offered to spend the night, and as much fun as a slumber party is, this was something I had to prove to myself that I could do. And I did. I slowly made my way up to my bedroom.
What a glorious night of sleep it was! Until 6AM when I stuck my arm out for my finger stick. Thank goodness is was a dream and I was able to go back to sleep.
I was going to try to get a few things done around my house. Cleaning, mainly. I didn't want to be embarrassed if people came over. And since I still couldn't drive, I was going to need some human contact. It's weird, the fatigue that comes with MS. I would be fine straightening up a few things then I would have to sit down. Now this is what I used to do when cleaning, but that was just because I felt like it! Now my body makes me.
I started thinking about my "plans" for this year. I had planned on being careful with my money so I could pay off some bills and do some renovations on my house. I wasn't going to take a lot of time off of work. I really wanted to be committed to all of this. And the thing I wanted more than anything was to get promoted to Specialist.
I'll tell you something....you may make plans, but God's plan for your life will always trump what you want. He knows best... I could almost hear him saying "Mary, Mary, Mary....Let's try my plan instead." What choice do I really have? I can learn to really, really trust him, or curl up in a fetal position and feel sorry for myself.
I'm going to have to go with the trust thing. Crying gives me a big headache, and let's face it, my brain has enough problems as it is.
Must....Have....Mexican.....Food....
The first thing I wanted to do when I got discharged is to eat something I can sorta taste. And since Kat and I go to mexican restaurants 99.9% of the time, I knew I wouldn't have to beg too much.
We get to the restaurant, and it's my first time outside with my walker. I'm a bit self-conscience. But it's not too busy, so it's a good first outing. The salsa was probably good, but at least I could taste spiciness....I'm feeling alive again.
Then something very curious happens. A guy comes into the restaurant and stops at every table asking people something. When he finally gets to us, he asks if we would like to donate to something....I look at him and point at my walker and asked him the same thing. Afterall, I have a deductible....Looks like I have a "walker license", too.
We head to the grocery next. I'm shuffling around with Kat following, pushing the cart. After we get to the third aisle or so, I hear her quietly laughing. When I look at her, she says, "Every old person who passes us, looks at you with sympathy." That's it, next time I'm writing up a shopping list and staying home.
I told everyone who called me or came to see me that I didn't want a lot of sympathy. I'm still Mary. You still need to tease me and treat me like normal. I still love to laugh and do all the things I did before this. I just have to learn to adjust a few things.
And figure out where to buy a cane with a sword hidden in it.
We get to the restaurant, and it's my first time outside with my walker. I'm a bit self-conscience. But it's not too busy, so it's a good first outing. The salsa was probably good, but at least I could taste spiciness....I'm feeling alive again.
Then something very curious happens. A guy comes into the restaurant and stops at every table asking people something. When he finally gets to us, he asks if we would like to donate to something....I look at him and point at my walker and asked him the same thing. Afterall, I have a deductible....Looks like I have a "walker license", too.
We head to the grocery next. I'm shuffling around with Kat following, pushing the cart. After we get to the third aisle or so, I hear her quietly laughing. When I look at her, she says, "Every old person who passes us, looks at you with sympathy." That's it, next time I'm writing up a shopping list and staying home.
I told everyone who called me or came to see me that I didn't want a lot of sympathy. I'm still Mary. You still need to tease me and treat me like normal. I still love to laugh and do all the things I did before this. I just have to learn to adjust a few things.
And figure out where to buy a cane with a sword hidden in it.
Captivity....Day 5 "I am outta here"
If all goes well, this is it. I get to go. I get mildly concerned when they come in to check my vitals. My heart rate is a 49 and it causes the "Low" alarm to go off. Seriously....But after checking a few things, no one is concerned. To celebrate, I order the oatmeal!
I get my last dose of medicine and head down to therapy. Today, I am making oatmeal. It becomes apparent to me when I remove it from the microwave, that it is indeed, possible to mess it up by adding too little water. Obviously, I don't eat it. She has me wash and dry my bowl and spoon and put it away. I'm starting to wander if I'm paying to actually clean this place up.
Physical therapy is next. After our usual exercises I ask if I can try out a cane. It just seemed so much better to me to use a cane as opposed to a walker. She lets me. Immediately, I realize I am most likely concentrating too hard not to fall. Then she tells me she just doesn't think I am ready....I can't use the cane and carry on a conversation at the same time. But at least I know and have a goal to work towards. I can do baby steps for a while.
I have several people helping me out of the hospital. I'm in a wheelchair, holding my flowers, balloons, bag of clothes and walker. Lady is pushing me and dude is carrying my toilet. I'm so proud.
But waiting for me is Kat, with her conversion van that I teased her a lot about when she got it. I distinctly remember saying to her, "Whose wheelchair are you going to be transporting?".
Turns out, someday it may be mine....
I get my last dose of medicine and head down to therapy. Today, I am making oatmeal. It becomes apparent to me when I remove it from the microwave, that it is indeed, possible to mess it up by adding too little water. Obviously, I don't eat it. She has me wash and dry my bowl and spoon and put it away. I'm starting to wander if I'm paying to actually clean this place up.
Physical therapy is next. After our usual exercises I ask if I can try out a cane. It just seemed so much better to me to use a cane as opposed to a walker. She lets me. Immediately, I realize I am most likely concentrating too hard not to fall. Then she tells me she just doesn't think I am ready....I can't use the cane and carry on a conversation at the same time. But at least I know and have a goal to work towards. I can do baby steps for a while.
I have several people helping me out of the hospital. I'm in a wheelchair, holding my flowers, balloons, bag of clothes and walker. Lady is pushing me and dude is carrying my toilet. I'm so proud.
But waiting for me is Kat, with her conversion van that I teased her a lot about when she got it. I distinctly remember saying to her, "Whose wheelchair are you going to be transporting?".
Turns out, someday it may be mine....
Captivity....Day 4
I think we all know my morning routine by now. Up at the crack of dawn, looking at some needles. I feel as though I need to shake up my routine, so I order something different for breakfast.
Not a good move on my part. Why, oh why, didn't I stick with the oatmeal? Even if you don't add the right amount of water to the mix, can you really screw it up? And the eggs were apparently from a powder. The orange slice was pretty good though....
Got my daily infusion of Solu-Medrol. Which to my brain, sounded a lot like Sodium Pentothal (truth serum). Ahem, so because I was mistaken and blamed a lot of things I may or may not have said to you (who will remain nameless), um, I am super sorry about that. I was using the excuse that for some reason I was getting at least a derivative of truth serum on everything I said. Oh, and I was using the "hospital bed license", also. Who is going to yell at someone in a hospital bed??
Again, the question begs to be asked....How do I solve any cases at work???
After my infusion, I take field trip to the physical and occupational department. First thing I do is shuffle around the kitchen with my walker and make a cup o' tea. The therapist didn't like that when I eat or drink something that is too hot, I just shoved it over to the side of my mouth that has no feeling. Me, I thought that fell under the motto, "Adapt, Improvise, Overcome", but no, now I have to test everything I eat or drink with my finger. Fine.
I did a little better on the physical therapy tests, and got my therapist to let me go home instead of a nursing home, on a couple of conditions:
- My doctor agrees
- I have someone stay with me for the first couple of days
- I stay on one floor
Um, sure, I can do that. Not a problem
I go back to my room, chat with my doc, he says that's cool. He felt that it would probably be mentally detrimental for me to go to a nursing home, so we can try home first. Smart guy, my doc. He will have someone come in and discuss a home nurse and physical therapist for a bit. They are going to keep me one more day to get my infusion and work with the therapist. Excellent....the end is near!
Oh, and my spine looked good!
I get a special visit from Renee and Nancy. And a burrito from Chipotle. I have known these chicks for half my life, now. Just being near them makes me happy. It was a great visit. Until, I was told that it was possible the University Hospital was not covered under City insurance anymore. I really gotta start opening up my mail more often!! (Turns out all is well, but the blood did drain from my face for a bit and I think I may have had a little panic attack.)
I barely recovered from that scare, when my - get this - CASE MANAGER comes in. Case Manager?? Um, I didn't think I was going to end up needing a case manager at 38. While I realize that there are plenty of different types of case managers, the only time I usually say those words is when I'm taking someone to the hospital because they want to hurt themselves. "Have you talked to your case manager, lately?"
She explains that I will be leaving tomorrow and will have 2 visits a week from both a nurse and physical therapist at my house. Cool. Then she says, "Do you know where you want us to order your medical equipment?". "I'm sorry, did you say something....What medical equipment?" She responds, "Your walker and bedside toilet." I am sure at this point I am having some kind of psychotic break. Since the only medical equipment I usually have to buy is band aids and Advil, how about you just pick a place for me. K? Thanks.
These lovely things get delivered around 7PM. I realize it's a little early, but could I go ahead and get my Ambien now. I think I'd like to go to sleep.
Oh, and the toilet remains unused. The walker has some time on it, though.
Thursday, May 13, 2010
Captivity....Day 3 or "An Evening at the Races"
April 19, 2010
The morning started off the same as the last with one addition....Heparin! Now I get to add a blood thinner to my menagerie of medicine, this one to prevent blood clots since all I'm doing is laying in bed. Oh, and they give it to you in your belly.
Now I'm really starting to question how old I am. I am a fall risk, not allowed to get out of bed alone, getting shots of insulin and blood thinner. Has anyone seen my bifocals??
This day really starts to take a down turn. The physical therapist stops by and we do some walking up and down the hall, and some balance exercises. Not quite sure how I felt as I was walking around, using a walker....but I didn't fall. Let's think a little positive, shall we? She tells me that I will also work with an occupational therapist, but in her opinion, I can't go home by myself. She wants to send me to a skilled nursing facility. And since I am too good to go to Drake, it looks like a nursing home. I'm sorry, hmmmm?? There goes the positivity.
Apparently, I need my hair colored.
So, I wait a bit impatiently for the occupational therapist. Her job is to see if I can do things on my own at home. So we practiced taking my socks off and on, making my bed (why, I don't do this at home) and she made me brush my teeth. She claims it's just part of evaluating if I can take care of myself, but I'm not convinced. We make plans to work together the next day, but I'll be going down to their pretend apartment to wander around....with my walker. Sigh....
About 5:30 in the afternoon, I am transported to theMorgue and Body Receiving, I mean, MRI. The doc wants to take a little peaky-peak at my spine. This is a bit worse than the brain MRI. They put you way into the tube and it takes a lot longer. Mine was probably just under 2 hours. I tried to find a little happy place and decided to recite Psalm 23 ("The Lord is my shepherd, I shall not want...."). I really wanted out of that tube! But it definitely helped.
Now I am starving! Even a terrible green bean wrap sounded ok. I get back to my room and grab my menu, because room service is opened until 10PM! Until I get their answering machine and it says that the hours are actually 10AM until 7PM. Why is this the thing that pushes me over the edge? Telling me I have a life long illness and that I may not be able to be a street cop doesn't make me cry. Realizing I missed dinner and knowing I can't eat my chocolate because of my darn blood sugar makes me lose it! I am mad! I'm hungry, I'm in the hospital, still, and my immune system works so well, it has attacked my brain! And, I'm hungry!!
During this time of wallowing in self-pity, I hear from my Hero (Ron) and Heroine (Alicia). They are coming up to see me, did I need anything? Now, I'm crying tears of joy! Soup and a vanilla coke sound wonderful....screw the blood sugar, bring on the insulin!
After I inhaled my soup, we chatted for awhile. My roommate probably got a little upset at how much I laughed, but it was so nice to see them. When I mentioned that my eyes were a little wacky and that all my surroundings were moving, they set me up with a little entertainment before they left. They put 2 of my mints side by side on my table, yelled "GO" and the race began! It was a close race. One would get a little bit in front of the other and then would fall behind. This went on....and on....and on. My plan was to eat the loser.
Turns out it was a tie.
The morning started off the same as the last with one addition....Heparin! Now I get to add a blood thinner to my menagerie of medicine, this one to prevent blood clots since all I'm doing is laying in bed. Oh, and they give it to you in your belly.
Now I'm really starting to question how old I am. I am a fall risk, not allowed to get out of bed alone, getting shots of insulin and blood thinner. Has anyone seen my bifocals??
This day really starts to take a down turn. The physical therapist stops by and we do some walking up and down the hall, and some balance exercises. Not quite sure how I felt as I was walking around, using a walker....but I didn't fall. Let's think a little positive, shall we? She tells me that I will also work with an occupational therapist, but in her opinion, I can't go home by myself. She wants to send me to a skilled nursing facility. And since I am too good to go to Drake, it looks like a nursing home. I'm sorry, hmmmm?? There goes the positivity.
Apparently, I need my hair colored.
So, I wait a bit impatiently for the occupational therapist. Her job is to see if I can do things on my own at home. So we practiced taking my socks off and on, making my bed (why, I don't do this at home) and she made me brush my teeth. She claims it's just part of evaluating if I can take care of myself, but I'm not convinced. We make plans to work together the next day, but I'll be going down to their pretend apartment to wander around....with my walker. Sigh....
About 5:30 in the afternoon, I am transported to the
Now I am starving! Even a terrible green bean wrap sounded ok. I get back to my room and grab my menu, because room service is opened until 10PM! Until I get their answering machine and it says that the hours are actually 10AM until 7PM. Why is this the thing that pushes me over the edge? Telling me I have a life long illness and that I may not be able to be a street cop doesn't make me cry. Realizing I missed dinner and knowing I can't eat my chocolate because of my darn blood sugar makes me lose it! I am mad! I'm hungry, I'm in the hospital, still, and my immune system works so well, it has attacked my brain! And, I'm hungry!!
During this time of wallowing in self-pity, I hear from my Hero (Ron) and Heroine (Alicia). They are coming up to see me, did I need anything? Now, I'm crying tears of joy! Soup and a vanilla coke sound wonderful....screw the blood sugar, bring on the insulin!
After I inhaled my soup, we chatted for awhile. My roommate probably got a little upset at how much I laughed, but it was so nice to see them. When I mentioned that my eyes were a little wacky and that all my surroundings were moving, they set me up with a little entertainment before they left. They put 2 of my mints side by side on my table, yelled "GO" and the race began! It was a close race. One would get a little bit in front of the other and then would fall behind. This went on....and on....and on. My plan was to eat the loser.
Turns out it was a tie.
Captivity....Day 2
April 18, 2010
It's Sunday. The day of rest. Which I got to do until about 6AM when they checked my temperature, blood pressure, oxygen level and stuck my finger for the blood sugar. It's hard to fall asleep after all that and even if I did, the needle with Insulin is next.
My nurse stops in to say hello, I think. She is the same one I had yesterday and I cannot understand a word she says. I feel as if she is nice, because she smiles a lot. I suppose she could be maniacal, instead. But since my cup is usually 3/4ths full, I'll go with nice.
She hooks me up to my second infusion and I order my breakfast. Oatmeal again. They give you a menu to pick your own meals. And you can call whenever you want. They call it room service. I'm not too keen on the name. Like I would actually forget where I am and really think it's something special. "I'll have pancakes and a Valium, please." They didn't think the request for a Valium was all that funny....
So, what do you do while in the hospital on a Sunday? Wait for lunch! And what a lunch it was!
It's Sunday. The day of rest. Which I got to do until about 6AM when they checked my temperature, blood pressure, oxygen level and stuck my finger for the blood sugar. It's hard to fall asleep after all that and even if I did, the needle with Insulin is next.
My nurse stops in to say hello, I think. She is the same one I had yesterday and I cannot understand a word she says. I feel as if she is nice, because she smiles a lot. I suppose she could be maniacal, instead. But since my cup is usually 3/4ths full, I'll go with nice.
She hooks me up to my second infusion and I order my breakfast. Oatmeal again. They give you a menu to pick your own meals. And you can call whenever you want. They call it room service. I'm not too keen on the name. Like I would actually forget where I am and really think it's something special. "I'll have pancakes and a Valium, please." They didn't think the request for a Valium was all that funny....
So, what do you do while in the hospital on a Sunday? Wait for lunch! And what a lunch it was!
Check it out! Tomato soup and a Tomato Mozzarella Panini from Panera.
Thank you, Lisa!! Now I really didn't taste it, but I know it was good. I think
my taste buds have muscle memory. And the company was superb!
The doctors visit me again. They tell me 2 doses of the Solu-Medrol should have me feeling better, but I'm not feeling it yet. That's ok. I like to be difficult, so I probably need just one more dose. They tell me I'm going to get a visit from a physical therapist in the morning. Coolio.
Today was a smorgasbord of visitors, too! I think I will sleep good tonight.
But, um, I'll take my Ambien just in case.
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