I don't think I'm handling this as gracefully as I should (could? is there a should? hmmmm) be. I don't want to be whinging when I'm hurting, and I'm not walking around, waila-waila-waila, I know I'm not doing that. I have a flaw, a lack of the essential graces. If people ask me how I'm doing, and it's a bad day, or they catch me off guard, I tell them the truth, or an altered form of the truth.
No, I'm not walking around saying, "Oh, my hands and feet are ice cold and my toes and fingernails are purple. When I look at my computer keyboard I can see a circle that's clear, everything around it has a fine mist film covering it. To see things clearly I have to move my head around. But my eye doctor said that my peripheral vision is fine, and he doesn't see any signs of pressure on my optic nerves. Oh, my back and collar bones are killing me......" You get the picture. I'm not doing that. But it's really hard to say, "Oh, I'm good!" **insert false cheery smile here**. So I blurt out, "Hanging in there." or something like that, most likely with no smile at all. Since this happens with people I know (the other people are too busy frowning at the floor and muttering as they scurry down the hall), they then lose the smile and look serious and feel obligated to ask questions that they really didn't want to ask, that I don't really want to answer. Why can't I just smile and nod? It isn't that they don't care...but they don't want to hear. It's just a social norm. And I have that blasted Luna Lovegood trait of stating the truth...most times the unfortunate truth. It's lovable in a fictional character. Not so much in a real-life person, who has lost their filter.
I found out that it's incredibly painful to carry a tray across a room. I went to a buffet-style soup & salad restaurant with a friend the other day and slid my tray along the shelf by the salad selections and filled it up, and stopped and the register to pay. Then I went to walk to the soup and potato bar, and almost dropped the tray. My lower back hurt so bad, and started cramping in what felt like a dozen places but was probably just one big spasm. I didn't really have any options on what to do, so I scurried over and put it down on the tray by the soups. I got the rest of my food, took a deep breath and picked up the tray again, hoping (silly me) that it wouldn't hurt. I was wrong.
Now the question I have is, have I gotten really out of shape and lost muscle tone in my lower back or is this a part of my not-so-new anymore body? This week has been a painful body week. A really painful week, like I'd rather be in bed with Leonard, and the kitties by my side, while I watch TV kind of painful week. Was it just because of that? I don't know. I'm doing the same things I used to do. I haven't had anyone help with any of the housework so I'm still the one that's doing it. Really....sometimes when I think about it I want to cry, or I get irrationally angry and then some days I have no emotion at all.
My place is getting messy again in little ways. It needs to be dusted, everywhere. I have odd bits that need to be put away. My fridge NEEDS to be cleaned out and the cabinet with my Tupperware needs to be organized (not related *L*). And there's little things. I need to wash sheets, and I have a TON of blankets that need to be washed. I have someone at work that needs them - I can't give him dirty blankets. Right now I have a sink full of dishes to do. I already did one when I got home...there were a lot that I hadn't done.
I was thinking about biting the bullet and putting my pride away, and asking some friends about having a work party, one day...heck, one afternoon!, and getting this place whipped into place. Then I realized I don't have anywhere to ask. Part of me wants to cry when I realize that. I don't feel sorry for myself, it's not a pity-party cry. It's a frustration because if I DID have people to help, it might get DONE and since I don't have the people, it's most likely going to stay the way it is. I'll do what I can on days that I get an energy rush so it won't get worse but with reality, it's not going to get much better.
There isn't a lot of happy in this one. Not even sarcasm.... Like I said, I'm not in a pity-party mood. I'm just tired.
Thursday, 2 February 2012
Sunday, 8 January 2012
And I'm back. One of my doctors' recommended a support group for me and I've been getting support from them. Hence the name, support group. They meet once a month and have a secret Facebook page. I've posted there a few times. There are two main moderators and one quasi-moderator. Good people. They all have home support though, people who live with them to help out, that they can talk to about things. Everyone has a unique set of medical conditions - we all share the fibro and most have chronic fatigue. No one has the neurally mediate hypotension though. Not one.
I asked the doctor who specializes in fibro about it, if it's common in people with fibro. She said that it's more common in people who have fibro than in people who don't have it. Apparently the constant pain causes changes in the central nervous system so people with fibro are more susceptible to a lot of different conditions. Yay.
My regular doctor has been researching it since I called him Obi-wan back in the fall. There's not a lot out there, even in the medical world. A lot of the Rx meds mix with the other things I'm taking or are pretty nasty. I've got one pair of special stockings (surprisingly comfy but way expensive); I'm getting more when I can afford them. I get to drink a glass of salt water once a day, it helps keep the veins open which helps keep the blood pressure raised. I'm on extended release sudafed twice a day and phentermine, they also raise blood pressure. I SHOULD be flying around bouncing off the wall. And I should be seeing a difference.......
My toenails are light purple when I get up in the morning and the arch of my feet are purple. I'm constantly cold, always and my hands are usually cold. I have to wear gloves outside, and when I take them off most of the time my hands are still freezing to the touch and my fingernails are purple too. I'm still dizzy most of the time, and have had some serious "episodes", scary ones. It's not getting better.
I'm still twitching up a storm too, and have stuff cramping, the big cramps like Charlie horses. All the stuff that's been kind of ignored.
I got home Friday night and faced my entire place that needs to be cleaned. There was no way I could do anything on Friday night. Not procrastinating.....I didn't have the energy to make dinner so I had Ritz crackers and an apple. The fatigue is all-encompassing and unless you've had it, it can't be understood or believed. Honestly, when I'm not in the middle of it I kind of forget how it is.
Saturday, I got up at noon. The shower needed to be cleaned. I had been at the store on Friday night, and was looking at shower cleaners. They are so flipping expensive. I had come across some Clorox shower cleaner and when I looked at it I thought, "I have a bottle of Clorox cleaner at home. I remember it...it doesn't spray right, the nozzle is messed up. I can just get an empty spray bottle and put it in there." So I got an empty spray bottle, problem solved! After I got up on Saturday I thought I'd tackle the shower before the energy wore out. I poured some cleaner from the Clorox from the bottled to the empty spray bottle. I didn't read the directions because I know how to use it. I went into the bathroom and opened up the shower door and started spritzing away. The cleaner was pretty goopy and it was blue, which I didn't remember but quite honestly, it's been awhile since I'd used that cleaner. Last time I cleaned the shower I just used the Comet powder. The spray bottle I had gotten wasn't a full-sized one so it ran out before I finished spraying the shower. I went back to fill it up again, and after I filled it up I thought I'd close up the Clorox bottle. I went to put the cap back on and realized it wasn't a spray cap. And the bottle wasn't a spray bottle. It had an odd angle to it, and the cap screwed on in a different way.....it was TOILET CLEANER. *sigh*
I can confirm.....Clorox toilet cleaner does a great job on showers.
I have very little brain left when I'm tired. That was pretty much it for the cleaning yesterday. Today I did clothes laundry and dishes, and I'm exhausted from it. I need to do so much more.
I've had my first person pull back from me since I've been sick, someone who I thought was a good friend. I hadn't seen them in quite awhile. When I saw them my body was doing pretty danged well. The pain level was pretty high, but I'm really good at ignoring that, or hiding that it's there. I was having good walking days - even on my bad days I can walk, and on my good days I can go for pretty long distances, and most stairs or hills are ok. But I had no short term memory, and was pretty flighty. When that happens, it really bothers me and I think it probably IS annoying to other people. I'd hoped that my friends would understand that it's not something I do on purpose though, and the same with my body. You're right....I don't "look sick", and some days I CAN do things. Those days are few and far between though. Most days I live on the couch. Anyway......I guess the mix of my mind/personality being fucked up and my body having some good days was too much. All I can do is hope they come back.
It's now 8:30 and I haven't eaten dinner. I should do that......
I asked the doctor who specializes in fibro about it, if it's common in people with fibro. She said that it's more common in people who have fibro than in people who don't have it. Apparently the constant pain causes changes in the central nervous system so people with fibro are more susceptible to a lot of different conditions. Yay.
My regular doctor has been researching it since I called him Obi-wan back in the fall. There's not a lot out there, even in the medical world. A lot of the Rx meds mix with the other things I'm taking or are pretty nasty. I've got one pair of special stockings (surprisingly comfy but way expensive); I'm getting more when I can afford them. I get to drink a glass of salt water once a day, it helps keep the veins open which helps keep the blood pressure raised. I'm on extended release sudafed twice a day and phentermine, they also raise blood pressure. I SHOULD be flying around bouncing off the wall. And I should be seeing a difference.......
My toenails are light purple when I get up in the morning and the arch of my feet are purple. I'm constantly cold, always and my hands are usually cold. I have to wear gloves outside, and when I take them off most of the time my hands are still freezing to the touch and my fingernails are purple too. I'm still dizzy most of the time, and have had some serious "episodes", scary ones. It's not getting better.
I'm still twitching up a storm too, and have stuff cramping, the big cramps like Charlie horses. All the stuff that's been kind of ignored.
I got home Friday night and faced my entire place that needs to be cleaned. There was no way I could do anything on Friday night. Not procrastinating.....I didn't have the energy to make dinner so I had Ritz crackers and an apple. The fatigue is all-encompassing and unless you've had it, it can't be understood or believed. Honestly, when I'm not in the middle of it I kind of forget how it is.
Saturday, I got up at noon. The shower needed to be cleaned. I had been at the store on Friday night, and was looking at shower cleaners. They are so flipping expensive. I had come across some Clorox shower cleaner and when I looked at it I thought, "I have a bottle of Clorox cleaner at home. I remember it...it doesn't spray right, the nozzle is messed up. I can just get an empty spray bottle and put it in there." So I got an empty spray bottle, problem solved! After I got up on Saturday I thought I'd tackle the shower before the energy wore out. I poured some cleaner from the Clorox from the bottled to the empty spray bottle. I didn't read the directions because I know how to use it. I went into the bathroom and opened up the shower door and started spritzing away. The cleaner was pretty goopy and it was blue, which I didn't remember but quite honestly, it's been awhile since I'd used that cleaner. Last time I cleaned the shower I just used the Comet powder. The spray bottle I had gotten wasn't a full-sized one so it ran out before I finished spraying the shower. I went back to fill it up again, and after I filled it up I thought I'd close up the Clorox bottle. I went to put the cap back on and realized it wasn't a spray cap. And the bottle wasn't a spray bottle. It had an odd angle to it, and the cap screwed on in a different way.....it was TOILET CLEANER. *sigh*
I can confirm.....Clorox toilet cleaner does a great job on showers.
I have very little brain left when I'm tired. That was pretty much it for the cleaning yesterday. Today I did clothes laundry and dishes, and I'm exhausted from it. I need to do so much more.
I've had my first person pull back from me since I've been sick, someone who I thought was a good friend. I hadn't seen them in quite awhile. When I saw them my body was doing pretty danged well. The pain level was pretty high, but I'm really good at ignoring that, or hiding that it's there. I was having good walking days - even on my bad days I can walk, and on my good days I can go for pretty long distances, and most stairs or hills are ok. But I had no short term memory, and was pretty flighty. When that happens, it really bothers me and I think it probably IS annoying to other people. I'd hoped that my friends would understand that it's not something I do on purpose though, and the same with my body. You're right....I don't "look sick", and some days I CAN do things. Those days are few and far between though. Most days I live on the couch. Anyway......I guess the mix of my mind/personality being fucked up and my body having some good days was too much. All I can do is hope they come back.
It's now 8:30 and I haven't eaten dinner. I should do that......
Tuesday, 25 October 2011
Confirmation one.....
I had the tilt table test today. It wasn't as horrific as I'd heard it could be. All in all it was pretty innocuous, and I didn't have to have as much stuff strapped onto me as could have been strapped on. Just a mechanical blood pressure cuff on one arm and a manual on the other.
At first I just sat in the chair and she took my blood pressure (the person taking the test was one of the people who I saw at OHSU before, so I had at least met her before) for an initial reading. It was a bit low, but not abnormally so. She set the machine, and since it's a teaching hospital, she was talking through what was doing to the student in the room. Not sure if the student was at an intern level or what. Anyway, they set the machine at the beginning to take my blood pressure every minute. I just sat there, she asked me to try not to move, for a couple of minutes. She was asking me some questions about what symptoms I had - did I ever feel faint, get light-headed, sweaty, cold and clammy (yes, yes, yes and yes) have pins & needles anywhere, numbness anywhere (yes and yes) and a bunch of other questions (all yes). She told me to tell her if at any time I felt any of the symptoms, and while we were talking I had a couple, so I told her. Easy enough
Then she had me lay down on the table, no straps or anything, flat on my back. The blood pressure machine was going about every minute still. I had a couple of little symptoms but nothing big - I think my hands got tingly, stuff like that. She put the straps on - they were thick velcro straps, maybe 4" across, 4 of them. One went across just above my ankles, one across my thighs, one across my waist and one just under my arms and under where my bra lies. Laying on my back with the straps on, it wasn't bad at first. Then I got almost like an anxiety head rush, weird....so I told 'em. It was different from the stuff I normally get and since I was strapped down I thought maybe it was claustrophobia like the MRI? I don't know....anyway. I told her about it. She had me close my eyes after about maybe 10 minutes, and when I noticed anything I told her about it. Not much just laying there, but a couple little things. At some point the blood pressure machine had changed and was readings about every 3 minutes instead of every minute.
After maybe 15 minute more she had me open my eyes and she tilted the table almost all the way upright. When the table settled upright I had an overwhelming feeling of being off balance, like my equilibrium was off-kilter. It lasted for a couple of minutes. We waited for that to settle down, then got ready for phase two.
I was still leaning back, probably a 70' angle. She had me tuck my hands into the strap that was at my waist so even though they weren't strapped down, I couldn't move them. She had me close my eyes again and asked me to relax, and listen to the sounds and imagine myself on a beach (they had ocean wave stuff playing). She was doing the relaxation technique stuff, and I knew that she wanted me to relax so they could get a good reading, but just relax? **snort** yeah right....I can't just relax on demand. I tried, so of course I could feel that all my muscles were tense. She put the blood pressure machine back to reading at once a minute. Yay....I love having my blood pressure taken. (yes....full sarcasm there. I really hate it.)
I managed to get somewhat relaxed, and got pins and needles in my feet. Great....so I told her, and of course talking and the pins and needles meant that any relaxing was gone. So I had to re-relax, which took time. **focus on relaxing.....** I got all relaxed again, and got a big wave of nausea and a head rush. Again, said what happened, refocused... *sigh* Same thing again......lips went numb. Each time I could feel all the relaxing un-relaxing though. The person doing the test had the patience of a saint though, I do have to say. I felt like I was failing a test that I hadn't studied for enough....ok, my fingers are tingly, is that what they want? My toes are numb....is that good? Not a clue in her voice. She wanted me to keep my eyes closed, and just said "ok, that's great", and I could hear papers rustling and writing, then she'd say "Now relax and feel the warm sun...." so I'd know she wanted me to just relax and all I could feel was every muscle tightened up.
I finally got myself relaxed, I think I started thinking about something completely unrelated to anything going on, like work or something (so maybe not relaxed but I got my BRAIN away which let my body relax a bit) and I got another HUGE wave of nausea and light-headedness, and the odd squeezing feeling I get around my eyes. The lady doing the test said, "Ok that's good! We're done! You can open you're eyes."
She said that I've "become quite good at adapting" so that I don't faint. I said something about how it's very hard for me to relax (it is...I can't just relax on command, physically. I'm quite good at spending time playing but my body doesn't relax easily), and she said, "No, you CAN'T relax. If you relax, you'll faint so you've developed ways to get around that by not relaxing." I did ask her, I had to ask her, that it really isn't all in my mind, because so many doctors have told me it is, and she told me that no, it ISN'T. It's real. She actually said, "The tests are in, it's confirmed. It's NOT in your head. You're NOT making it up." She was very emphatic. Which made me feel good, but also made me tear up. And like a big dork, I've been crying on and off all day.
She's sending the tests to my doctor so he can look at them, and the next time I'm there we can look at the meds I'm taking and see if there's anything I can take for it. I'm not going to worry about the cost for ANY prescriptions until next year when I have to start paying for them. I'm also going to try and figure out how to stock up on as many as I can under this year's insurance because next year will be a lot more expensive.
I've felt off all day, really tired and wobbly, for lack of a better word. I want to stay home tomorrow. I'm not sure, quite honestly, if I want to stay home because I feel like being a hermit or because I don't feel good. I have plenty of time available, but I don't like calling in. I feel guilty calling in, I've gone in with pneumonia. I'll decide in the morning, I suppose.
So the good thing....I know for sure what's going on, and why I'm spacey! NO ONE can tell me I'm a hypochondriac again. Well they can, but not about this. ;)
At first I just sat in the chair and she took my blood pressure (the person taking the test was one of the people who I saw at OHSU before, so I had at least met her before) for an initial reading. It was a bit low, but not abnormally so. She set the machine, and since it's a teaching hospital, she was talking through what was doing to the student in the room. Not sure if the student was at an intern level or what. Anyway, they set the machine at the beginning to take my blood pressure every minute. I just sat there, she asked me to try not to move, for a couple of minutes. She was asking me some questions about what symptoms I had - did I ever feel faint, get light-headed, sweaty, cold and clammy (yes, yes, yes and yes) have pins & needles anywhere, numbness anywhere (yes and yes) and a bunch of other questions (all yes). She told me to tell her if at any time I felt any of the symptoms, and while we were talking I had a couple, so I told her. Easy enough
Then she had me lay down on the table, no straps or anything, flat on my back. The blood pressure machine was going about every minute still. I had a couple of little symptoms but nothing big - I think my hands got tingly, stuff like that. She put the straps on - they were thick velcro straps, maybe 4" across, 4 of them. One went across just above my ankles, one across my thighs, one across my waist and one just under my arms and under where my bra lies. Laying on my back with the straps on, it wasn't bad at first. Then I got almost like an anxiety head rush, weird....so I told 'em. It was different from the stuff I normally get and since I was strapped down I thought maybe it was claustrophobia like the MRI? I don't know....anyway. I told her about it. She had me close my eyes after about maybe 10 minutes, and when I noticed anything I told her about it. Not much just laying there, but a couple little things. At some point the blood pressure machine had changed and was readings about every 3 minutes instead of every minute.
After maybe 15 minute more she had me open my eyes and she tilted the table almost all the way upright. When the table settled upright I had an overwhelming feeling of being off balance, like my equilibrium was off-kilter. It lasted for a couple of minutes. We waited for that to settle down, then got ready for phase two.
I was still leaning back, probably a 70' angle. She had me tuck my hands into the strap that was at my waist so even though they weren't strapped down, I couldn't move them. She had me close my eyes again and asked me to relax, and listen to the sounds and imagine myself on a beach (they had ocean wave stuff playing). She was doing the relaxation technique stuff, and I knew that she wanted me to relax so they could get a good reading, but just relax? **snort** yeah right....I can't just relax on demand. I tried, so of course I could feel that all my muscles were tense. She put the blood pressure machine back to reading at once a minute. Yay....I love having my blood pressure taken. (yes....full sarcasm there. I really hate it.)
I managed to get somewhat relaxed, and got pins and needles in my feet. Great....so I told her, and of course talking and the pins and needles meant that any relaxing was gone. So I had to re-relax, which took time. **focus on relaxing.....** I got all relaxed again, and got a big wave of nausea and a head rush. Again, said what happened, refocused... *sigh* Same thing again......lips went numb. Each time I could feel all the relaxing un-relaxing though. The person doing the test had the patience of a saint though, I do have to say. I felt like I was failing a test that I hadn't studied for enough....ok, my fingers are tingly, is that what they want? My toes are numb....is that good? Not a clue in her voice. She wanted me to keep my eyes closed, and just said "ok, that's great", and I could hear papers rustling and writing, then she'd say "Now relax and feel the warm sun...." so I'd know she wanted me to just relax and all I could feel was every muscle tightened up.
I finally got myself relaxed, I think I started thinking about something completely unrelated to anything going on, like work or something (so maybe not relaxed but I got my BRAIN away which let my body relax a bit) and I got another HUGE wave of nausea and light-headedness, and the odd squeezing feeling I get around my eyes. The lady doing the test said, "Ok that's good! We're done! You can open you're eyes."
She said that I've "become quite good at adapting" so that I don't faint. I said something about how it's very hard for me to relax (it is...I can't just relax on command, physically. I'm quite good at spending time playing but my body doesn't relax easily), and she said, "No, you CAN'T relax. If you relax, you'll faint so you've developed ways to get around that by not relaxing." I did ask her, I had to ask her, that it really isn't all in my mind, because so many doctors have told me it is, and she told me that no, it ISN'T. It's real. She actually said, "The tests are in, it's confirmed. It's NOT in your head. You're NOT making it up." She was very emphatic. Which made me feel good, but also made me tear up. And like a big dork, I've been crying on and off all day.
She's sending the tests to my doctor so he can look at them, and the next time I'm there we can look at the meds I'm taking and see if there's anything I can take for it. I'm not going to worry about the cost for ANY prescriptions until next year when I have to start paying for them. I'm also going to try and figure out how to stock up on as many as I can under this year's insurance because next year will be a lot more expensive.
I've felt off all day, really tired and wobbly, for lack of a better word. I want to stay home tomorrow. I'm not sure, quite honestly, if I want to stay home because I feel like being a hermit or because I don't feel good. I have plenty of time available, but I don't like calling in. I feel guilty calling in, I've gone in with pneumonia. I'll decide in the morning, I suppose.
So the good thing....I know for sure what's going on, and why I'm spacey! NO ONE can tell me I'm a hypochondriac again. Well they can, but not about this. ;)
Saturday, 22 October 2011
I'm not looking forward to the tilt table test on Monday. From what I've heard about it, the testee gets electrodes placed on their chest (not sure if they get put anywhere else), has a blood pressure cuff on and an IV in (loves the IVs!). Then they lay down on a table and get strapped in place so they can't move. Strap across the chest and legs, and arms and head too. That in itself isn't sounding good. I don't the feeling when I can't move. The difference from the MRI is that I won't be encased like a sausage.
Once the strapping is done, the table is moved so the testee is in an upright position. The table is tilted to different angles. Blood pressure is taken and the electrodes are read. The reason that everything is strapped down is twofold. One is kind of obvious. If the table is tilted forward, no one wants the testee falling face-first onto the floor. The other is with conditions like the one I'm being tested for, people will subconsciously move - foot tapping, leg crossing or jiggling, little things - that help keep the blood flowing which helps to regulate the blood pressure. If you're strapped in place, you can't do that. So during the test the testers are watching to see, both through the results coming from the electrodes and blood pressure, and well....if someone flat out faints, what symptoms the person has, both from postural (not moving) and positional (the table tilting). There can be other effects - vomiting, dizziness, vertigo, headaches - nothing new but all can be more severe.
The test is supposed to take 90 minutes. I've heard that if you faint, they stop the test. Part of me is hoping that I just faint right away so I won't have to go through 90 minutes of medieval torture. Another part thinks that maybe other results might come from the test.
I talked to someone at my doctor's office today and both my doctor and his assistant have been on vacation for two weeks and just got back. They haven't got to my MRI results yet, so I get to wait until my appointment next Friday. I figure if it's not important enough for anyone to look at or make a priority, it's going to be nothing or I get to add yet another pill to the daily pile. I'd rather it be nothing, for obvious reasons and because the pills are getting to be damned expensive.
Once the strapping is done, the table is moved so the testee is in an upright position. The table is tilted to different angles. Blood pressure is taken and the electrodes are read. The reason that everything is strapped down is twofold. One is kind of obvious. If the table is tilted forward, no one wants the testee falling face-first onto the floor. The other is with conditions like the one I'm being tested for, people will subconsciously move - foot tapping, leg crossing or jiggling, little things - that help keep the blood flowing which helps to regulate the blood pressure. If you're strapped in place, you can't do that. So during the test the testers are watching to see, both through the results coming from the electrodes and blood pressure, and well....if someone flat out faints, what symptoms the person has, both from postural (not moving) and positional (the table tilting). There can be other effects - vomiting, dizziness, vertigo, headaches - nothing new but all can be more severe.
The test is supposed to take 90 minutes. I've heard that if you faint, they stop the test. Part of me is hoping that I just faint right away so I won't have to go through 90 minutes of medieval torture. Another part thinks that maybe other results might come from the test.
I talked to someone at my doctor's office today and both my doctor and his assistant have been on vacation for two weeks and just got back. They haven't got to my MRI results yet, so I get to wait until my appointment next Friday. I figure if it's not important enough for anyone to look at or make a priority, it's going to be nothing or I get to add yet another pill to the daily pile. I'd rather it be nothing, for obvious reasons and because the pills are getting to be damned expensive.
Thursday, 13 October 2011
Flora, Fauna and Merriweather
Actually Flora and Merriweather. Fauna must have been on a break. They're the fairies that help Aurora, also known as Sleeping Beauty in the Disney movie. They have also started working in the lab at my doctor's office and did my most recent blood letting......errrr....blood draw for my lab work.
I have to say it was the most entertaining visit to a lab to get my blood drawn that I ever recall. I had to have a full work up so I knew they were going to take the full five cigar-size vials, and I wasn't looking forward to it. I don't handle blood tests well anymore. I fully admit that I'm quite wimpy. I can handle regular shots ok, but blood draws....nope. I get light-headed and my lips get numb and I feel like I'm going to faint. (How do I tell the difference from any other feeling like I'm going to faint? hehehe.... This is a sudden rush, it's different. Gotta trust me I guess.) Anyway, I was ready for the blood test, all 12-hour fasted and had an appointment set so I could hurry in on my break from work.
I got there and checked in. I had barely sat down and the door open and a woman in a bright red printed labbish/nursish coat popped open the door and called my name. She looked amazingly like the bossy fairy from Sleeping Beauty. I went over and followed her as she bustled down the hall to the lab.
We got to the door of the lab just as another woman started to enter the hall from the lab. She was a little bit shorted and plumper and dressed in a bright blue printed labbish/nursish coat, and was holding a really scary looking bag that had an ominously foul odor emanating from it. As she hurried past she said, "We need to get this out of here quickly!" The first lab tech grabbed a can and sprayed some orange freshener around the room. We were off to a grand start.
I sat down and the first lab tech in red (the print on her coat was little spring flowers) dropped the safety bar down so I wouldn't fall out (I felt like I was getting into a ride at Disneyland). The second tech scurried back into the room. The room was teeny, with the chair for people to sit in being pretty big - it has big padded arms on both sides so you can rest your arms down and they can easily stab you to get at the veins, plus the big padded safety bar that drops down which reminds me of a high school desk. There's also wide cabinets running across three of the walls leaving just enough room for the techs to stand, with maybe a 3'x3' square in the middle. The two techs began to kind of weave a coordinated dance in this tiny space as they got ready to work their blood draining magic.
The tech in red asked me if there was an arm that usually worked easier for me. I told her that no, there really isn't, but my veins do tend to hide. She grabbed my left arm and turned it over and started not-so-gently slapping the inside of my arm, I guess looking to see if one of my veins would slap her back. None did so she tried on the inside of my right arm. Those veins also just laid there and ignored her. She made a sound kind of like "Hrrrrrrm" and picked up my hand and started the slapping on the back of my left hand. She commented that my hands were cold. Yes, my hands were cold. I'm ALWAYS freezing anymore.
While she was doing this the tech in blue was arranging the five giant empty tubes in a tray next to me. The red tech said something to her about the special way she had of warming up people's hands when they were cold. She said, "Oh, I can do that!" She grabbed something and was off out of the room again.
All of a sudden it hit me....I was in the midst of the fairies. The scurrying and bustling, the bright colors and flitting about. When the blue fairy came back, the green one would come bobbing in behind her.
Flora (the red fairy) started to rub my hands in hers. She was making small talk - I have no clue what she was talking about, but it was kind, grandmotherly talk. I think it was something about cold hands...that would make sense. Merriweather came back into the room (no Fauna, drat!) with her solution to warm up too-cold hands. I did laugh - I had to. Her solution? An extra-large surgical glove filled with hot water. She flopped it onto the back of my hand and the fingers wibbled about and the thumb bounced off my knuckles.
After a couple of minutes Flora pulled the glove off and did a touch-test on the back of my hand, like you'd check the top of a cake to see if it was done. She deemed me ok to take out of the oven and grabbed needle number one. I looked at the floor. I felt the needle go in and it twinged, but not too bad. Then Flora kind of jiggled it a bit (ouch) and said, "Don't dry up on me now...." and moved the tube a bit. (OUCH).
Merriweather said "Oh I hate when that happens."
Flora, "Well we're going to have to use the other hand. It's just decided to close right up." and she pulled the needle out. (ouchouchouch)
hematoma starting. Hand me another cotton ball, dear." Merriweather fluttered a bit and handed over a clean cotton ball and some tape. I looked over and there was a bubble on the back of my hand, about two inches long and and inch and a half across, and about an inch high (I so wish I was exaggerating). Flora put the cotton ball on it and pressed down firmly (surprisingly it didn't hurt, but then...I had a little bit of ringing going on in my ears just about then.....) and taped it down tight. She was talking, I think Merriweather was too, and explaining that sometimes the blood flow will stop when the needle draw is attached, but when it's taken off the blood starts flowing again under the skin. Yeah yeah whatever.....I know it didn't happen on purpose.
Between the two of them they looked at the vial that had the wee bit of blood in it and decided that it had enough for one of the tests and set it aside. Then the whole thing started over on the back of my other hand. It was cold as ice too, but the water-filled glove had cooled off so Merriweather bustled off to refill it. Flora got me hooked up with needle number two and the drainage started, and damned if 30 seconds in it didn't stop again.
This time not only were my ears ringing, but my lips went numb and my vision started to black out. I thought all kinds of unladylike thoughts. With everything that's gone on, with the constant dizziness and the odds of my fainting everyday, I was going to drop from a blood test? I hate being wimpy. It really makes me angry.....
I really couldn't put my head between my knees or down low so I kind of just leaned over and asked if I could get some water. Flora and Merriweather were busy scurrying about. Right hand had blossomed into a beautiful hematoma equal in size to left hand - one of them was squashing it into submission and the other was staring at the nearly empty tube of blood with disgust (It was finally deemed worthy of one small test too). When I asked for the water they went into high-flurry mode worthy of Disney Oscar mode. I can see why those fairies starred in several different movies. (They did....check out some of those older movies....same 'toons, just different costumes.)
Merriweather scoured the counters, cabinets and drawers and discovered that the room hand no cups or bottles of water. She disappeared out of the room to find me some water. Flora looked at me with a more practiced eye and figured that I was too angry with myself and probably wouldn't faint, and since Merriweather was on the water search, had flipped my left arm over to resume her quest for a usable vein.
Merriweather brought back a glass of water and while I drank it she ran off to get ANOTHER glove full of hot water. This glove sat on the inside of my arm for a couple of minutes. The fairies looked at each other and with true fairy silent communication decided to use a butterfly needle for the last and final try. I gave up all pretense of staring at the floor and just closed my eyes while Flora hooked me up for the last drainage attempt. She actually found the vein on the first attempt, so I told her as she picked up the first vial, "If I faint and the blood is flowing, keep going until you get all the blood you need THEN wake me up, because I don't want to have to come back in!"
The final go worked and they got the last three vials, which were the ones that had to be full. The bubbles on the back of my hands made matching bruises that ended up being about the size of silver dollars, amazing bright really pretty colors. They're still there, over a week later. (They are pretty, bruises, if stop thinking about what they are.) The fairies were happy and fun, flitting and bustling about. The wibbly hot water glove is an awesome invention - I bet the kids love it when they use it. I hope I never have to meet the fairies again. And I kind of wonder where Fauna has been hanging out......
I have to say it was the most entertaining visit to a lab to get my blood drawn that I ever recall. I had to have a full work up so I knew they were going to take the full five cigar-size vials, and I wasn't looking forward to it. I don't handle blood tests well anymore. I fully admit that I'm quite wimpy. I can handle regular shots ok, but blood draws....nope. I get light-headed and my lips get numb and I feel like I'm going to faint. (How do I tell the difference from any other feeling like I'm going to faint? hehehe.... This is a sudden rush, it's different. Gotta trust me I guess.) Anyway, I was ready for the blood test, all 12-hour fasted and had an appointment set so I could hurry in on my break from work.
I got there and checked in. I had barely sat down and the door open and a woman in a bright red printed labbish/nursish coat popped open the door and called my name. She looked amazingly like the bossy fairy from Sleeping Beauty. I went over and followed her as she bustled down the hall to the lab.
We got to the door of the lab just as another woman started to enter the hall from the lab. She was a little bit shorted and plumper and dressed in a bright blue printed labbish/nursish coat, and was holding a really scary looking bag that had an ominously foul odor emanating from it. As she hurried past she said, "We need to get this out of here quickly!" The first lab tech grabbed a can and sprayed some orange freshener around the room. We were off to a grand start.
I sat down and the first lab tech in red (the print on her coat was little spring flowers) dropped the safety bar down so I wouldn't fall out (I felt like I was getting into a ride at Disneyland). The second tech scurried back into the room. The room was teeny, with the chair for people to sit in being pretty big - it has big padded arms on both sides so you can rest your arms down and they can easily stab you to get at the veins, plus the big padded safety bar that drops down which reminds me of a high school desk. There's also wide cabinets running across three of the walls leaving just enough room for the techs to stand, with maybe a 3'x3' square in the middle. The two techs began to kind of weave a coordinated dance in this tiny space as they got ready to work their blood draining magic.
The tech in red asked me if there was an arm that usually worked easier for me. I told her that no, there really isn't, but my veins do tend to hide. She grabbed my left arm and turned it over and started not-so-gently slapping the inside of my arm, I guess looking to see if one of my veins would slap her back. None did so she tried on the inside of my right arm. Those veins also just laid there and ignored her. She made a sound kind of like "Hrrrrrrm" and picked up my hand and started the slapping on the back of my left hand. She commented that my hands were cold. Yes, my hands were cold. I'm ALWAYS freezing anymore.
While she was doing this the tech in blue was arranging the five giant empty tubes in a tray next to me. The red tech said something to her about the special way she had of warming up people's hands when they were cold. She said, "Oh, I can do that!" She grabbed something and was off out of the room again.
All of a sudden it hit me....I was in the midst of the fairies. The scurrying and bustling, the bright colors and flitting about. When the blue fairy came back, the green one would come bobbing in behind her.
Flora (the red fairy) started to rub my hands in hers. She was making small talk - I have no clue what she was talking about, but it was kind, grandmotherly talk. I think it was something about cold hands...that would make sense. Merriweather came back into the room (no Fauna, drat!) with her solution to warm up too-cold hands. I did laugh - I had to. Her solution? An extra-large surgical glove filled with hot water. She flopped it onto the back of my hand and the fingers wibbled about and the thumb bounced off my knuckles.
After a couple of minutes Flora pulled the glove off and did a touch-test on the back of my hand, like you'd check the top of a cake to see if it was done. She deemed me ok to take out of the oven and grabbed needle number one. I looked at the floor. I felt the needle go in and it twinged, but not too bad. Then Flora kind of jiggled it a bit (ouch) and said, "Don't dry up on me now...." and moved the tube a bit. (OUCH).
Merriweather said "Oh I hate when that happens."
Flora, "Well we're going to have to use the other hand. It's just decided to close right up." and she pulled the needle out. (ouchouchouch)
hematoma starting. Hand me another cotton ball, dear." Merriweather fluttered a bit and handed over a clean cotton ball and some tape. I looked over and there was a bubble on the back of my hand, about two inches long and and inch and a half across, and about an inch high (I so wish I was exaggerating). Flora put the cotton ball on it and pressed down firmly (surprisingly it didn't hurt, but then...I had a little bit of ringing going on in my ears just about then.....) and taped it down tight. She was talking, I think Merriweather was too, and explaining that sometimes the blood flow will stop when the needle draw is attached, but when it's taken off the blood starts flowing again under the skin. Yeah yeah whatever.....I know it didn't happen on purpose.
Between the two of them they looked at the vial that had the wee bit of blood in it and decided that it had enough for one of the tests and set it aside. Then the whole thing started over on the back of my other hand. It was cold as ice too, but the water-filled glove had cooled off so Merriweather bustled off to refill it. Flora got me hooked up with needle number two and the drainage started, and damned if 30 seconds in it didn't stop again.
This time not only were my ears ringing, but my lips went numb and my vision started to black out. I thought all kinds of unladylike thoughts. With everything that's gone on, with the constant dizziness and the odds of my fainting everyday, I was going to drop from a blood test? I hate being wimpy. It really makes me angry.....
I really couldn't put my head between my knees or down low so I kind of just leaned over and asked if I could get some water. Flora and Merriweather were busy scurrying about. Right hand had blossomed into a beautiful hematoma equal in size to left hand - one of them was squashing it into submission and the other was staring at the nearly empty tube of blood with disgust (It was finally deemed worthy of one small test too). When I asked for the water they went into high-flurry mode worthy of Disney Oscar mode. I can see why those fairies starred in several different movies. (They did....check out some of those older movies....same 'toons, just different costumes.)
Merriweather scoured the counters, cabinets and drawers and discovered that the room hand no cups or bottles of water. She disappeared out of the room to find me some water. Flora looked at me with a more practiced eye and figured that I was too angry with myself and probably wouldn't faint, and since Merriweather was on the water search, had flipped my left arm over to resume her quest for a usable vein.
Merriweather brought back a glass of water and while I drank it she ran off to get ANOTHER glove full of hot water. This glove sat on the inside of my arm for a couple of minutes. The fairies looked at each other and with true fairy silent communication decided to use a butterfly needle for the last and final try. I gave up all pretense of staring at the floor and just closed my eyes while Flora hooked me up for the last drainage attempt. She actually found the vein on the first attempt, so I told her as she picked up the first vial, "If I faint and the blood is flowing, keep going until you get all the blood you need THEN wake me up, because I don't want to have to come back in!"
The final go worked and they got the last three vials, which were the ones that had to be full. The bubbles on the back of my hands made matching bruises that ended up being about the size of silver dollars, amazing bright really pretty colors. They're still there, over a week later. (They are pretty, bruises, if stop thinking about what they are.) The fairies were happy and fun, flitting and bustling about. The wibbly hot water glove is an awesome invention - I bet the kids love it when they use it. I hope I never have to meet the fairies again. And I kind of wonder where Fauna has been hanging out......
Friday, 7 October 2011
Speed typing test.......
I have twin bullseye targets on the back of my hands in beautiful mauve, purple and yellow with red spots in the center. A teeny matching one blooms on the inside of my left arm. They really are pretty. Needle bruises really, from blood draws. My veins hide from needles, rolling away like wet spaghetti and disappearing in a flash so I almost always end up with bruises.
MRI tomorrow morning. I get to be stuffed into the tube like a sausage. I just know that my hair will be all squoonched up on top for days after, twisted into a knot where they tried to tie it off like a sausage is tied off....... I hate MRIs. Really. HATE. They make me claustrophobic, to the point where I have to take anxiety pills before hand and have someone drive me home, which was a job in itself, getting a ride there an back. But I did. Eventually.
OK, back to work. **tapdances off into the distance**
MRI tomorrow morning. I get to be stuffed into the tube like a sausage. I just know that my hair will be all squoonched up on top for days after, twisted into a knot where they tried to tie it off like a sausage is tied off....... I hate MRIs. Really. HATE. They make me claustrophobic, to the point where I have to take anxiety pills before hand and have someone drive me home, which was a job in itself, getting a ride there an back. But I did. Eventually.
OK, back to work. **tapdances off into the distance**
Sunday, 2 October 2011
Chewing on erasers.....
The thought of doctor shopping intimidates me, so I decided I would give my current doctor-group one last try. Not the one I've been seeing, but the one last person there who hasn't given be bad advice or f*cked me over in the past. His name is Seth, and in the past he's been pretty good. He's not actually a doctor - he's a FNP, nurse practitioner? He can order X-rays and prescribe medications. He's the one who, after about four months of going to different doctors and being told that nothing was wrong with me (I was really drained and had a hacking cough that wouldn't go away) by several different docs in the office, diagnosed me with pneumonia. I didn't have a lot of the typical signs and the other guys hadn't been listening to me (seems to be something I have problems with....).
So anyway, I was sitting there on Friday at work, feeling like crap, thinking how ridiculous it was that I had to go to a cardiologist for a tilt table test when I don't have any problems with my heart and I thought, "Maybe Seth will listen...". So I called up the office and asked if he had any appointments. And he did! So off I went.
The nurse who lead me back is usually snarky but she was friendly; that was a really nice start. I've lost another couple of pounds, and I'm down one of the 50 pound sections on the doctor's scale - that was great. I'm not losing huge chunks at a time anymore and losing at a more even keel. I'm still losing from being sick (believe me......I'm on a kick of eating cookies!) but it's not as huge so I'm not as freaked out by it. Anyway. The visit was off to a good start.
When Seth came in I him, "I want you to know that you're my Obi-wan Kanobe" and he laughed and said, "I'm your only hope?" I told him what's been going on. Everything. How I got sick, starting with the stuff several years ago and how it built up (Reader's Digest version) and how I've had problems with the other doctors and staff in the office. Remaining professional, and not saying anything against anyone he works with, I got the feeling that he wasn't surprised at anything I said. I might be wrong. I don't know if it matters. He spent about an hour, aside from the time that I spent telling him what had been going on. We went over what the OHSU specialists had recommended, reviewed my meds and made some adjustments. He's going to contact OHSU and get the tilt table test set up there - he agrees that there's no need for me to go a cardiologist and have a full work up there when OHSU can do the test right there. (yeah! 4-hour new patient test and $50 co-pay saved!) Plus with the changes in meds, it will probably save me about $100 a month in Rx co-pays, $75 on one prescription alone.
He spent a lot of time asking me different questions that no one has asked before. Some things that my friends and I had discussed, some things that I've read in articles, but stuff that isn't main stream. Which is why I like him. He wants me to get tested for Lyme's disease. He recommended having a naturopath do the testing because they do more extensive testing (I LOVE Portland!). I forgot to call my insurance to find one that's covered. **note to self...call insurance on Monday** (why is it that cartoons seem so much louder at 1AM than during the day?) He specifically asked about any odd bites in the last year to two years, and I've been eaten alive over the last two years with several bites being out of the norm that didn't seem like either mosquito or spider bites. He said that if it IS Lyme's, I probably will still have the other conditions and those won't go away and may not get any better but the Lyme's needs to be treated, and the Lyme's might have triggered the other conditions.
That's my good doctor news. It's quite exciting for me.
I stayed home a couple of days last week, Monday and Tuesday. Migraines were out of control again and I was out of pills. Two months since went back to work without any time off....I'd hoped to be able to keep working. I have Monday off, then some time in November (a week and a half) and a day in December. I'm hoping the staggered extra days off will work to keep me rested enough to not have to call out sick. All in all I feel pretty much back to about where I was before I went out for disability. The differences are that I kind of know what's going on know, and I'm not as fully totally exhausted. On weekends, like today, I pretty much can plan on sleeping until noon (which I SHOULD NOT DO) or if I don't sleep until noon I'm a couch potato until noon. I don't do anything productive on Saturdays, couldn't if I wanted to. Sundays around noon I have a "holy CRAP I have to get this place clean!" moment and I try to do what I can. That usually entails basic bathroom wipedown (it's sanitary), clean kitchen counters & stove top, change bed sheets and try to tidy up some. The tidying up is really slacking off. The last three loads of laundry haven't gotten folded and put away. The work clothes get hung up when they come out of the dryer - the rest are in the chair right over there by the TV. *sigh* One of my friends said, "It's just you so it doesn't matter." but it DOES. I want my house clean and tidy. I don't want to look at piles of laundry, or have my counter/island cluttered up. It WAS cleared off. Granted, there's only a few things on it and it's not junk. But I can't keep up with it the way I want to, and the way I feel that I should. Oh, and dusting does NOT happen.
I'm having problems with proteins. What the heck? Where did that come from? I need to figure this one out....the "easy quick" stuff isn't good for the migraines, and the fresh stuff isn't sitting well with my tummy. Brook suggest tofu. Reminds me of chewing erasers.....
So anyway, I was sitting there on Friday at work, feeling like crap, thinking how ridiculous it was that I had to go to a cardiologist for a tilt table test when I don't have any problems with my heart and I thought, "Maybe Seth will listen...". So I called up the office and asked if he had any appointments. And he did! So off I went.
The nurse who lead me back is usually snarky but she was friendly; that was a really nice start. I've lost another couple of pounds, and I'm down one of the 50 pound sections on the doctor's scale - that was great. I'm not losing huge chunks at a time anymore and losing at a more even keel. I'm still losing from being sick (believe me......I'm on a kick of eating cookies!) but it's not as huge so I'm not as freaked out by it. Anyway. The visit was off to a good start.
When Seth came in I him, "I want you to know that you're my Obi-wan Kanobe" and he laughed and said, "I'm your only hope?" I told him what's been going on. Everything. How I got sick, starting with the stuff several years ago and how it built up (Reader's Digest version) and how I've had problems with the other doctors and staff in the office. Remaining professional, and not saying anything against anyone he works with, I got the feeling that he wasn't surprised at anything I said. I might be wrong. I don't know if it matters. He spent about an hour, aside from the time that I spent telling him what had been going on. We went over what the OHSU specialists had recommended, reviewed my meds and made some adjustments. He's going to contact OHSU and get the tilt table test set up there - he agrees that there's no need for me to go a cardiologist and have a full work up there when OHSU can do the test right there. (yeah! 4-hour new patient test and $50 co-pay saved!) Plus with the changes in meds, it will probably save me about $100 a month in Rx co-pays, $75 on one prescription alone.
He spent a lot of time asking me different questions that no one has asked before. Some things that my friends and I had discussed, some things that I've read in articles, but stuff that isn't main stream. Which is why I like him. He wants me to get tested for Lyme's disease. He recommended having a naturopath do the testing because they do more extensive testing (I LOVE Portland!). I forgot to call my insurance to find one that's covered. **note to self...call insurance on Monday** (why is it that cartoons seem so much louder at 1AM than during the day?) He specifically asked about any odd bites in the last year to two years, and I've been eaten alive over the last two years with several bites being out of the norm that didn't seem like either mosquito or spider bites. He said that if it IS Lyme's, I probably will still have the other conditions and those won't go away and may not get any better but the Lyme's needs to be treated, and the Lyme's might have triggered the other conditions.
That's my good doctor news. It's quite exciting for me.
I stayed home a couple of days last week, Monday and Tuesday. Migraines were out of control again and I was out of pills. Two months since went back to work without any time off....I'd hoped to be able to keep working. I have Monday off, then some time in November (a week and a half) and a day in December. I'm hoping the staggered extra days off will work to keep me rested enough to not have to call out sick. All in all I feel pretty much back to about where I was before I went out for disability. The differences are that I kind of know what's going on know, and I'm not as fully totally exhausted. On weekends, like today, I pretty much can plan on sleeping until noon (which I SHOULD NOT DO) or if I don't sleep until noon I'm a couch potato until noon. I don't do anything productive on Saturdays, couldn't if I wanted to. Sundays around noon I have a "holy CRAP I have to get this place clean!" moment and I try to do what I can. That usually entails basic bathroom wipedown (it's sanitary), clean kitchen counters & stove top, change bed sheets and try to tidy up some. The tidying up is really slacking off. The last three loads of laundry haven't gotten folded and put away. The work clothes get hung up when they come out of the dryer - the rest are in the chair right over there by the TV. *sigh* One of my friends said, "It's just you so it doesn't matter." but it DOES. I want my house clean and tidy. I don't want to look at piles of laundry, or have my counter/island cluttered up. It WAS cleared off. Granted, there's only a few things on it and it's not junk. But I can't keep up with it the way I want to, and the way I feel that I should. Oh, and dusting does NOT happen.
I'm having problems with proteins. What the heck? Where did that come from? I need to figure this one out....the "easy quick" stuff isn't good for the migraines, and the fresh stuff isn't sitting well with my tummy. Brook suggest tofu. Reminds me of chewing erasers.....