Saturday, March 27, 2010
...interesting. O2???
So I got an oxygen condenser from a friend who is an M.D. I believe my brain has been oxygen starved for who knows how long. I use it and immediately have better eyesight, less to no pain in the legs, no brain fog, and stamina to be awake. Who knew? I've been told to use it as much as I want throughout the day.
Friday, March 19, 2010
The Scans
This is how the events of the day went per time.
March 17 have bladder catheter installed at 4 p.m.
March 18 2:45 a.m. I wake up. Snooze off and on until 4 a.m.
4 a.m. alarm goes off & Andrew gets up.
5:45 a.m. Get into electric wheelchair and head to the van.
5:47 a.m. Van driver wants me to back up onto the lift. It's dark. I can't see. I pull in frontwards which means Andrew has to come in the van and put my feet down so I can turn around and face forwards.
5:49 a.a. Andrew comes into the back of the van and while doing so hits his head hard on the top of the door. It nocks him over. The van driver was standing right there and could have told him to watch his head when entering but didn'. Andrew picks himself up after a few minutes and helps me to put my feet down. I turn to face the windshield and the feet go back up. Meanwhile I'm worried about Andrew's head because it left a bump, gash, goose egg and bruise. I keep asking him if his vision went off. He continues to say he's fine.
6 a.m. The driver tethers my chair in.
6:05 a.m. we are off.
6:10 a.m. While driving down the road it becomes apparent that the driver of this medivan was not versed on country roads, or curves, or the speed at which to drive as a whole. It also became apparent later that she wasn't experienced with wind or driving a disabled person somewhere or off ramps or...need I go on? This driver needed a lot more training.
6:30 a.m. So at the stop sign to turn right to go into town she takes a sharp and fast right. This caused the right side of my wheelchair to take flight and come off of the ground. It landed again as the van straightened out after the turn and I leaned to the right to set the wheel back down. That should have never happened for two reasons that doesn't take a genius to figure out... 1. she should have not turned so sharp or so speedily. 2. She should have tethered my wheelchair to the floor a lot tighter. Isn't that what those floor ties are for? If I were anyone else in that wheelchair that probably would have broken my neck.
7:30 a.m. I puke in the van. Most of it goes down the front. Some of it ends up on the van. Mmm french fries. We stop on the side of the road, clean me up, and are on the way again.
7:40 a.m. The fun starts. I don't know what turn off it was but the driver decides to take it at last minute and ends up hugging the cans between the highway and the off ramp. I can't believe she didn't get us killed. Then off the wrong off ramp we go to down town/city. So her navi is confused, she's driving downtown, and Andrew is beside himself. I piped up and gave directions. She says "I know". Apparently she doesn't from what she's doing. Oh and she says this is the second time being in that particular city and has never been to the particular hospital where we are going. What? No wonder why the company only pays minimum wage to it's drivers. They suck! So the she finds her way to the freeway.
8:00 a.m. We arrive at the hospital 15 minutes late.
8:15 a.m. I have barf juice all over my front. Andrew and I go to a dressing room where I put on two hospital gowns and clean up a little more.
8:20 a.m. Andrew fills out paperwork at the reception desk and then we wait.
8:40 a.m. We are sent to a waiting room (I sit in my elect. chair in the hall--more air/ventilation there).
8:45 a.m. 3 nice gentlemen come to me with a Hoyer lift. Thank God I won't have to try to transfer. I had never used one before, so it was a little different and a bit scary, but they knew what they were doing. They put me on the gurney. The Ativan that I took earlier was starting to kick in. Lying on my back wasn't so bad as long as my calves and ankles were elevated which they did.
9:40 a.m. I believe was the actual time I went in the tube. It was uneventful. I slept on and off.
10:40 a.m. Done with the MRI tube, back on the hoyer lift, and back on the trusty old wheelchair again. It seems Andrew was still okay. That was a hard hit he took on the head. How about some warning driver!
11:00 a.m. To the vascular center and beyond--no just the vascular center. They had our info. We waited a few minutes until someone came out and told us that both the neuroradiologist durgeon and the leg doctor had a meeting until one, but she was going to try to locate the neuroradiologist.
11:10 a.m. We were put into a nice and big room and shortly the neuroradiologist came by to chat with us a bit before his meeting. He explained what he saw on the MRV and said I had a narrow right side vein with a large left side vein that had spider veins. He explained why he wanted to do angio and not stenting. I don't remember if he said he wanted to do both sides at once. I'll get back to ya on that.
11:20 a.m. so off to the meeting both doctors went. And now we wait until 1 p.m.
During this time, Andrew ate a snack and I wouldn't eat anything because I was afraid to lose it. A nurse came in and talked about compression hose, but then gave up.
1:00 p.m. Both docs return. The leg doc tries to close curtains to give me privacy. The scan starts on the legs. The leg doctor intermittently squeezes the calves during the sonogram scan. His verdict is that the muscles in my legs are not making the valves retun the blood. He suggests doing leg exercises and using a bicycle, which I will do when I feel better. Right now pointing and retracting the toes is about as good as it gets.
1:15 p.m. The neuroradiologist/surgeon comes in and watches the scans of the neck. His verdict is narrowing of the right side and spider veins on the left.
1:30 p.m. Neuroradiologist says a rimeframe for procedure, we talk a little more. At this point I am so tired I can't remember much more.
3:00 p.m. leave for home. It's windy and the driver swerves and ends up in oncoming traffic. I'm really too tired to notice.
5:00 pm home at last.
March 17 have bladder catheter installed at 4 p.m.
March 18 2:45 a.m. I wake up. Snooze off and on until 4 a.m.
4 a.m. alarm goes off & Andrew gets up.
5:45 a.m. Get into electric wheelchair and head to the van.
5:47 a.m. Van driver wants me to back up onto the lift. It's dark. I can't see. I pull in frontwards which means Andrew has to come in the van and put my feet down so I can turn around and face forwards.
5:49 a.a. Andrew comes into the back of the van and while doing so hits his head hard on the top of the door. It nocks him over. The van driver was standing right there and could have told him to watch his head when entering but didn'. Andrew picks himself up after a few minutes and helps me to put my feet down. I turn to face the windshield and the feet go back up. Meanwhile I'm worried about Andrew's head because it left a bump, gash, goose egg and bruise. I keep asking him if his vision went off. He continues to say he's fine.
6 a.m. The driver tethers my chair in.
6:05 a.m. we are off.
6:10 a.m. While driving down the road it becomes apparent that the driver of this medivan was not versed on country roads, or curves, or the speed at which to drive as a whole. It also became apparent later that she wasn't experienced with wind or driving a disabled person somewhere or off ramps or...need I go on? This driver needed a lot more training.
6:30 a.m. So at the stop sign to turn right to go into town she takes a sharp and fast right. This caused the right side of my wheelchair to take flight and come off of the ground. It landed again as the van straightened out after the turn and I leaned to the right to set the wheel back down. That should have never happened for two reasons that doesn't take a genius to figure out... 1. she should have not turned so sharp or so speedily. 2. She should have tethered my wheelchair to the floor a lot tighter. Isn't that what those floor ties are for? If I were anyone else in that wheelchair that probably would have broken my neck.
7:30 a.m. I puke in the van. Most of it goes down the front. Some of it ends up on the van. Mmm french fries. We stop on the side of the road, clean me up, and are on the way again.
7:40 a.m. The fun starts. I don't know what turn off it was but the driver decides to take it at last minute and ends up hugging the cans between the highway and the off ramp. I can't believe she didn't get us killed. Then off the wrong off ramp we go to down town/city. So her navi is confused, she's driving downtown, and Andrew is beside himself. I piped up and gave directions. She says "I know". Apparently she doesn't from what she's doing. Oh and she says this is the second time being in that particular city and has never been to the particular hospital where we are going. What? No wonder why the company only pays minimum wage to it's drivers. They suck! So the she finds her way to the freeway.
8:00 a.m. We arrive at the hospital 15 minutes late.
8:15 a.m. I have barf juice all over my front. Andrew and I go to a dressing room where I put on two hospital gowns and clean up a little more.
8:20 a.m. Andrew fills out paperwork at the reception desk and then we wait.
8:40 a.m. We are sent to a waiting room (I sit in my elect. chair in the hall--more air/ventilation there).
8:45 a.m. 3 nice gentlemen come to me with a Hoyer lift. Thank God I won't have to try to transfer. I had never used one before, so it was a little different and a bit scary, but they knew what they were doing. They put me on the gurney. The Ativan that I took earlier was starting to kick in. Lying on my back wasn't so bad as long as my calves and ankles were elevated which they did.
9:40 a.m. I believe was the actual time I went in the tube. It was uneventful. I slept on and off.
10:40 a.m. Done with the MRI tube, back on the hoyer lift, and back on the trusty old wheelchair again. It seems Andrew was still okay. That was a hard hit he took on the head. How about some warning driver!
11:00 a.m. To the vascular center and beyond--no just the vascular center. They had our info. We waited a few minutes until someone came out and told us that both the neuroradiologist durgeon and the leg doctor had a meeting until one, but she was going to try to locate the neuroradiologist.
11:10 a.m. We were put into a nice and big room and shortly the neuroradiologist came by to chat with us a bit before his meeting. He explained what he saw on the MRV and said I had a narrow right side vein with a large left side vein that had spider veins. He explained why he wanted to do angio and not stenting. I don't remember if he said he wanted to do both sides at once. I'll get back to ya on that.
11:20 a.m. so off to the meeting both doctors went. And now we wait until 1 p.m.
During this time, Andrew ate a snack and I wouldn't eat anything because I was afraid to lose it. A nurse came in and talked about compression hose, but then gave up.
1:00 p.m. Both docs return. The leg doc tries to close curtains to give me privacy. The scan starts on the legs. The leg doctor intermittently squeezes the calves during the sonogram scan. His verdict is that the muscles in my legs are not making the valves retun the blood. He suggests doing leg exercises and using a bicycle, which I will do when I feel better. Right now pointing and retracting the toes is about as good as it gets.
1:15 p.m. The neuroradiologist/surgeon comes in and watches the scans of the neck. His verdict is narrowing of the right side and spider veins on the left.
1:30 p.m. Neuroradiologist says a rimeframe for procedure, we talk a little more. At this point I am so tired I can't remember much more.
3:00 p.m. leave for home. It's windy and the driver swerves and ends up in oncoming traffic. I'm really too tired to notice.
5:00 pm home at last.
Saturday, February 27, 2010
What doesn't kill us...
makes us stronger--so they say.
To tell you the truth, this MS has worn me down. I no longer have anything to live for. As of the last couple of weeks, I have become intermittently bladder incontinent. That means that 3 to 4 hours a day I urinate myself uncontrollably--only a little--every 5 minutes. I had a urinalysis done by Home Health which showed I did not have a UTI. So is this a result of an exacerbation? Probably. When is enough enough? If I have to wear a catheter for the rest of my life along with having the leg problems, I don't see the point of going on with life. What life? I have no quality of life. I do have an appointment with a university hospital for CCSVI scans. Wooptie doo.I am not excited about that at all. I can't stand this particular university hospital. I've been there before. They have already dropped the ball.
Yeah life sucks and I hate everything about it.
My husband has been nicer to me, that's the only good thing about all this. It took me getting MS for him to be a decent human being.
To tell you the truth, this MS has worn me down. I no longer have anything to live for. As of the last couple of weeks, I have become intermittently bladder incontinent. That means that 3 to 4 hours a day I urinate myself uncontrollably--only a little--every 5 minutes. I had a urinalysis done by Home Health which showed I did not have a UTI. So is this a result of an exacerbation? Probably. When is enough enough? If I have to wear a catheter for the rest of my life along with having the leg problems, I don't see the point of going on with life. What life? I have no quality of life. I do have an appointment with a university hospital for CCSVI scans. Wooptie doo.I am not excited about that at all. I can't stand this particular university hospital. I've been there before. They have already dropped the ball.
Yeah life sucks and I hate everything about it.
My husband has been nicer to me, that's the only good thing about all this. It took me getting MS for him to be a decent human being.
Tuesday, December 29, 2009
The Caregiver Who Really Doesn't Care.
So Andrew and I have been married for 6 1/2 years. It has been a long and hard trip for me emotionally. Today was yet another example of the hardship. I had to plug my fingers in my ears and say Lalala just to get him to stop talking and go away.
It all started when the glass guy called to tell me that he lost our paperwork and Andrew had to bring the glass pane into the shop. Andrew, of course, makes it into something it does not have to be and in the process makes me feel terrible. He continues to make me feel terrible almost on a daily basis and he wonders why I say "I hate" him. In fact he tells me not to hate him. So, I guess I am just supposed to take all the negative shit he dishes out and suck it up and treat him like a prince--like accepting that he's negative and that's wonderful. That's not the way it works fucker.
There are many reasons why I say I hate him. The main one is by how he makes me feel. He knows he makes me feel worse thus making the MS worse. I asked him this morning if he feels that people like him because he's a nice guy that people gravitate towards. He said no. I think he is narcissistic in that he thinks because HE feels love toward me that I should automatically feel all kinds of love and appreciation for everything that he DOES. It's really a fucked up relationship.
All I get out of him is the basics and nothing more. Someone else could do the basics too. I need MORE.
in case your reading this, Andrew, here is what I need, which I think you already know, but just don't want to do.
A husband who never argues or ever drags out something so long that I can't take it and makes me feel terrible.
I need a nice guy for a husband and not an immature brat, which you are.
A husband who is actually a nice person. He's not a nice person. He'd rather make sure everyone knows how miserable he is--including me. That's fucked up!
Communication with the foundation of the barn guy.
Don needs to be called and asked if he got a chance to see Don's planes for the 2-stall addition and what are we going to get a bid on and will his barn match what we already own?
How much the 4-stall barn quote is with the gravel included
When can he start because of the muddy ground?
I have to still tell Andrew to do this kind of stuff.
Yesterday, I had to tell him to go outside and pay attention to the tree guys. He would rather hide like a kid.
I'm so tired of this. How much more am I supposed to endure of a caregiver who only does the basics and no more.
Arguing with me only makes me worse. How am I supposed to not hate on a person who makes me worse.
Like I said, when I die, the last words out of my mouth will be "congratulations. You've finally killed someone.
It all started when the glass guy called to tell me that he lost our paperwork and Andrew had to bring the glass pane into the shop. Andrew, of course, makes it into something it does not have to be and in the process makes me feel terrible. He continues to make me feel terrible almost on a daily basis and he wonders why I say "I hate" him. In fact he tells me not to hate him. So, I guess I am just supposed to take all the negative shit he dishes out and suck it up and treat him like a prince--like accepting that he's negative and that's wonderful. That's not the way it works fucker.
There are many reasons why I say I hate him. The main one is by how he makes me feel. He knows he makes me feel worse thus making the MS worse. I asked him this morning if he feels that people like him because he's a nice guy that people gravitate towards. He said no. I think he is narcissistic in that he thinks because HE feels love toward me that I should automatically feel all kinds of love and appreciation for everything that he DOES. It's really a fucked up relationship.
All I get out of him is the basics and nothing more. Someone else could do the basics too. I need MORE.
in case your reading this, Andrew, here is what I need, which I think you already know, but just don't want to do.
A husband who never argues or ever drags out something so long that I can't take it and makes me feel terrible.
I need a nice guy for a husband and not an immature brat, which you are.
A husband who is actually a nice person. He's not a nice person. He'd rather make sure everyone knows how miserable he is--including me. That's fucked up!
Communication with the foundation of the barn guy.
Don needs to be called and asked if he got a chance to see Don's planes for the 2-stall addition and what are we going to get a bid on and will his barn match what we already own?
How much the 4-stall barn quote is with the gravel included
When can he start because of the muddy ground?
I have to still tell Andrew to do this kind of stuff.
Yesterday, I had to tell him to go outside and pay attention to the tree guys. He would rather hide like a kid.
I'm so tired of this. How much more am I supposed to endure of a caregiver who only does the basics and no more.
Arguing with me only makes me worse. How am I supposed to not hate on a person who makes me worse.
Like I said, when I die, the last words out of my mouth will be "congratulations. You've finally killed someone.
Sunday, December 20, 2009
Purple Legs and Feet
This is a result of me taking a shower and my feet having to be on the floor for approximately five minutes.
Saturday, December 5, 2009
Stanford on Hold.
So I got a call from Stanford yesterday. I was told that the CCSVI surgery has been put on hold. Some politician got a hold of the situation. So I'm put off until late January or February. I really don't care because the doctor even said on the phone that it probably won't make me any better, but will hopefully keep me from getting worse. With that kind of a statement, I don't hold a lot of faith in the whole thing.
So, I'm letting Andrew go through all the feelings of hope or whatever there is. He's not helping me anyway. He is hoping that the surgery will be an easy fix for him. He thinks he helps me by doing the minimum as in throwing food at me occasionally and rinsing my ass after a shower. There is so much more, but he'd be better off if I was dead anyway 'cause he's really not interested in really helping..
Today I stood up next to my bed once. I tried again later and couldn't do it.
So, I'm letting Andrew go through all the feelings of hope or whatever there is. He's not helping me anyway. He is hoping that the surgery will be an easy fix for him. He thinks he helps me by doing the minimum as in throwing food at me occasionally and rinsing my ass after a shower. There is so much more, but he'd be better off if I was dead anyway 'cause he's really not interested in really helping..
Today I stood up next to my bed once. I tried again later and couldn't do it.
What's Wrong with the American Language?
I've noticed a severe decline in American language usage as in it's becoming incorrect more and more. It's all over T.V., radio, books, magazines, and basically all media. Who hires these dummies? Dummies themselves is the only answer I can find. I'm not even old enough to be thoroughly disgusted by people of my generation, but it seems everyone that wants to say something or write something is doing it. Here's a clue. Just because everyone is doing it doesn't mean it is correct by any means.
Here are some examples.
December 5, 2009 is just that. It is not correct to say or write December 5th. It is correct to say or write December 5. PERIOD. The only time st, nd, rd, or th is added at the end of a date is if it is said or written BEFORE the month as in the 5th of December. Look it up! It's incredibly ignorant, stupid, and uneducated to say or write December 5th, 2009. LOOK IT UP! Even a simple word processing program knows better. Try it. Start typing and it will insert the correct type.
Another one is "till".
This is completely uneducated to spell this word in the wrong context. I've seen local T.V. stations write "this offer is valid till the expiration date". It is 'til or until. DUH! You would only spell "till" if you are going to till a field.
What's wrong with people? Are they getting that dumbed down to where they do what everyone else does? I have one word for them. Dummy! Grow a brain stem!
Here are some examples.
December 5, 2009 is just that. It is not correct to say or write December 5th. It is correct to say or write December 5. PERIOD. The only time st, nd, rd, or th is added at the end of a date is if it is said or written BEFORE the month as in the 5th of December. Look it up! It's incredibly ignorant, stupid, and uneducated to say or write December 5th, 2009. LOOK IT UP! Even a simple word processing program knows better. Try it. Start typing and it will insert the correct type.
Another one is "till".
This is completely uneducated to spell this word in the wrong context. I've seen local T.V. stations write "this offer is valid till the expiration date". It is 'til or until. DUH! You would only spell "till" if you are going to till a field.
What's wrong with people? Are they getting that dumbed down to where they do what everyone else does? I have one word for them. Dummy! Grow a brain stem!
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