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. ;)
Tuesday, 25 October 2011
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.....
Monday, 26 September 2011
Happy things!
Jedward. Oh my GOD but they're flippin' hilarious. Found them on (where else?) Graham Norton. Two Irish twin boys (twins usually come in twos....), 17 when they started out on UKs X-factor so they're 19 now. They sing, and dance and talk. They talk a LOT. The talking isn't part of their act but it's part of the obscurity and hilarity. I told Marissa about them and they entertain her too. And Skennifer. Just need to drag Tara in and we can sing "Lipstick" next time we're at the Ship.
My migraine is gone for now! That's a HUGE happy thing! Especially since I'm almost out of pills (they are on their way and should arrive probably tomorrow). Four-day migraine, it was here this morning when I woke up so I called out from work and went back to bed and miracle of miracles I fell back asleep. I woke up at 12:45 and it's GONE. The Howee inside me is tap-dancing like mad.
Kittens are always happy, I have one next to me purring away, and one across the room being silly and meowing for no reason. Both of them have finally stopped shedding (maybe the super hot weather is done?) and have their extra-soft fur back on.
Speaking of super hot weather, it's NOT hot out. It's actually rather cool. Cool enough that my window is only partly open and I have a blanket over my legs. It's windy out. I love this weather.......
Some Jedward for you.
http://www.youtube.com/watch?v=vtKFmct9nCI
http://www.youtube.com/watch?v=pXouSYabDig (flashy light warning)
My migraine is gone for now! That's a HUGE happy thing! Especially since I'm almost out of pills (they are on their way and should arrive probably tomorrow). Four-day migraine, it was here this morning when I woke up so I called out from work and went back to bed and miracle of miracles I fell back asleep. I woke up at 12:45 and it's GONE. The Howee inside me is tap-dancing like mad.
Kittens are always happy, I have one next to me purring away, and one across the room being silly and meowing for no reason. Both of them have finally stopped shedding (maybe the super hot weather is done?) and have their extra-soft fur back on.
Speaking of super hot weather, it's NOT hot out. It's actually rather cool. Cool enough that my window is only partly open and I have a blanket over my legs. It's windy out. I love this weather.......
Some Jedward for you.
http://www.youtube.com/watch?v=vtKFmct9nCI
http://www.youtube.com/watch?v=pXouSYabDig (flashy light warning)
Saturday, 24 September 2011
He always makes me laugh...
Graham Norton.
I have him on now. I record his show, just because he makes me laugh. He's one of my happy thoughts, always. He's a British talk show host. Oh, I know. He's done a lot more, but that's what I record. He's completely unrestrained, and does things that wouldn't be allowed on US shows. He and his guests are bleeped all the time by US censors. Silly US prudes. Right now his guests are Sharon & Ozzy Osborne and Ricky Gervais. I'm watching it and listening to the conversation, but I could just listen to them laughing and it would cheer me up, especially Ricky.
So I had to clean out the litter box. Yes, one of the joys of cat ownership. I love my cats. (I really do. *L* NOT finding something good to say about myself!) Cleaning out the litter box.......before the new body that I got for Little Christmas, I did it, didn't LOVE it but didn't really think twice about it. Now it's an adventure. First, getting the litter home from the store. It's cheaper in the bigger containers and since I'm paying over $200 a month in Rx costs money is on my mind a lot (trying not to bring it into my mind a lot......going to focus on manifesting it somehow!) so I do the brand/cost comparison at the store, and look for coupons. Hoist it into the cart, then if I'm lucky I'm at a store where they can scan it in the cart and I don't have to haul it up onto the counter for the checker-clerk. Haul it out of the cart into the trunk, drive home then out of the trunk and totter with it into the house. Each of these times I'm internally praying "don't get dizzy don't get dizzy don't get dizzy" because picking up heavy things from low spots will usually, 9 times out of 10, trigger a great dizzy episode. The litter boxes are downstairs (and they're staying there!) so the container can stay downstairs. Score! But today when I went to the store I had two bags to carry in (each rather heavy) as well as my purse and my dinner. So I left the litter in the car. Tonight at about 9PM I realized...I need to clean out the boxes.
The meds I'm taking that were working a little bit for the fibro pain, Savella, isn't working any more. When my doctor prescribed it she said that for some people it may only work for a short while, then it would stop. I was hoping that wouldn't happen. The relief it gave wasn't huge but it did give some relieve....I wasn't aware of how much until it stopped working completely. I'm back to everything aching, "happy face scale - mid-range" all the time. (Side note, I love Ozzy. He has no filter at all. *L*) My doc hasn't prescribed anything to replace it. I've mentioned that she's stopped doing her job? I have a call out on find a new doctor.....
Today the "happy face scale" has moved up and is higher, don't know why and probably never really will. The migraine level isn't so bad though, I've only had to take one migraine pill and an ibuprofen. And drink lots of water, of course! (also took a forbidden nap...heheheh) I've got the Tin Man walk going today. So walking downstairs, hauling the 27 pound cat litter out of the trunk and bringing it in and cleaning out two litter boxes didn't sound appealing. When I got there, the sweet adorable teeny kittens had been quite active and kicked litter all over the floor so I had to sweep too. By the time I got to the trash can, I was crying. I rarely cry because things hurt. I think it was partly because it hurt and partly frustration. Days and times like that I do feel quite wimpy. There's no other adequate word.
What saved the moment? It's a beautiful night. It's clear out, and there are a gazillion stars, with a few wispy clouds. I leaned back on the car and relaxed and found the 7 Sisters and listened to a little boy laughing as he ran down the street, taking a walk with his dad. After a few minutes the dizziness went away and I got my breath back. The sound of the little boy laughing faded away and it got still.
I went back inside and upstairs, and sat down on the couch. Gromit is next to me, a giant white furball and Wallace is looking at me from across the room, her eyelids drooping as she starts to snooze. They are worth it. They're middle-aged; they're 12 now. I hope they last quite awhile longer. Will I get other cats when they go? I really don't know and I'm not going to think about it now. When I wake up tomorrow I'll be sandwiched in between them, struggling to get out to use the bathroom. Oh, and Wallace is still carrying her Snoopy carcass around like her baby, so cute!
I didn't provide a song to listen to, but since Ricky Gervais makes me laugh I'm adding this. It's a lullaby, the softer side of Ricky.
http://www.youtube.com/watch?v=Jc20vMz0V7Q
I have him on now. I record his show, just because he makes me laugh. He's one of my happy thoughts, always. He's a British talk show host. Oh, I know. He's done a lot more, but that's what I record. He's completely unrestrained, and does things that wouldn't be allowed on US shows. He and his guests are bleeped all the time by US censors. Silly US prudes. Right now his guests are Sharon & Ozzy Osborne and Ricky Gervais. I'm watching it and listening to the conversation, but I could just listen to them laughing and it would cheer me up, especially Ricky.
So I had to clean out the litter box. Yes, one of the joys of cat ownership. I love my cats. (I really do. *L* NOT finding something good to say about myself!) Cleaning out the litter box.......before the new body that I got for Little Christmas, I did it, didn't LOVE it but didn't really think twice about it. Now it's an adventure. First, getting the litter home from the store. It's cheaper in the bigger containers and since I'm paying over $200 a month in Rx costs money is on my mind a lot (trying not to bring it into my mind a lot......going to focus on manifesting it somehow!) so I do the brand/cost comparison at the store, and look for coupons. Hoist it into the cart, then if I'm lucky I'm at a store where they can scan it in the cart and I don't have to haul it up onto the counter for the checker-clerk. Haul it out of the cart into the trunk, drive home then out of the trunk and totter with it into the house. Each of these times I'm internally praying "don't get dizzy don't get dizzy don't get dizzy" because picking up heavy things from low spots will usually, 9 times out of 10, trigger a great dizzy episode. The litter boxes are downstairs (and they're staying there!) so the container can stay downstairs. Score! But today when I went to the store I had two bags to carry in (each rather heavy) as well as my purse and my dinner. So I left the litter in the car. Tonight at about 9PM I realized...I need to clean out the boxes.
The meds I'm taking that were working a little bit for the fibro pain, Savella, isn't working any more. When my doctor prescribed it she said that for some people it may only work for a short while, then it would stop. I was hoping that wouldn't happen. The relief it gave wasn't huge but it did give some relieve....I wasn't aware of how much until it stopped working completely. I'm back to everything aching, "happy face scale - mid-range" all the time. (Side note, I love Ozzy. He has no filter at all. *L*) My doc hasn't prescribed anything to replace it. I've mentioned that she's stopped doing her job? I have a call out on find a new doctor.....
Today the "happy face scale" has moved up and is higher, don't know why and probably never really will. The migraine level isn't so bad though, I've only had to take one migraine pill and an ibuprofen. And drink lots of water, of course! (also took a forbidden nap...heheheh) I've got the Tin Man walk going today. So walking downstairs, hauling the 27 pound cat litter out of the trunk and bringing it in and cleaning out two litter boxes didn't sound appealing. When I got there, the sweet adorable teeny kittens had been quite active and kicked litter all over the floor so I had to sweep too. By the time I got to the trash can, I was crying. I rarely cry because things hurt. I think it was partly because it hurt and partly frustration. Days and times like that I do feel quite wimpy. There's no other adequate word.
What saved the moment? It's a beautiful night. It's clear out, and there are a gazillion stars, with a few wispy clouds. I leaned back on the car and relaxed and found the 7 Sisters and listened to a little boy laughing as he ran down the street, taking a walk with his dad. After a few minutes the dizziness went away and I got my breath back. The sound of the little boy laughing faded away and it got still.
I went back inside and upstairs, and sat down on the couch. Gromit is next to me, a giant white furball and Wallace is looking at me from across the room, her eyelids drooping as she starts to snooze. They are worth it. They're middle-aged; they're 12 now. I hope they last quite awhile longer. Will I get other cats when they go? I really don't know and I'm not going to think about it now. When I wake up tomorrow I'll be sandwiched in between them, struggling to get out to use the bathroom. Oh, and Wallace is still carrying her Snoopy carcass around like her baby, so cute!
I didn't provide a song to listen to, but since Ricky Gervais makes me laugh I'm adding this. It's a lullaby, the softer side of Ricky.
http://www.youtube.com/watch?v=Jc20vMz0V7Q
Tuesday, 20 September 2011
Page Two.... He's reading "The Queen"....that's an in-joke you know
http://www.youtube.com/watch?v=xtrEN-YKLBM
Some music to listen to while you read. The lyrics are apt for how I've felt lately. (If you don't like the song, read the lyrics I'm going to post at the end.....please)
These first couple of posts....blogs....blurbs? may not be the most positive because I'm going to be venting. Fair warning. This too shall pass. I kind of feel like the Black Knight in the Monte Python movie in a way though. I'm not dead yet!
First off, people keep saying, or I should say, posting on Facebook (more about that in another post), "hope your better!" or "are you better yet?". Clarification for everyone. I have multiple, CHRONIC, LIFELONG diagnosis (diagnosii? is it like rhinocerii?). I'm not going to get over this. I'm not getting better. It's not going to go away. I'm not going to die from any of it, but I'm also not going to wake up and be better tomorrow. If I'm lucky, and I pray that I am, I'll find the right combination of doctors, therapies and medications that work and I can afford (KEY...that I can afford) that will manage my conditions and bring quality back into my life. Right now, I don't have it. "It's the terror of knowing what this world is about......"
I have been diagnosed with myofascial pain syndrome (severe), chronic fatigue syndrome (severe), fibromyalgia (severe), and IBS (severe). I've been told that I have neurally mediated hypotension, 99% certain, but until I can get the testing done I won't have a confirmed diagnosis. There are several other conditions that I don't remember the names of that have to do with how my system processes and metabolizes which accounts for the severely low vitamin D levels, and most likely may play into why I have trouble losing weight (not why I gained it!). (I've been on supplements for the Vitamin D for quite some time, so far there's been a slight increase in these levels). I'd have to pull out the paperwork for the other conditions - I admit I don't remember the names. Oh, chronic migraines have been in there for years, also severe (no shit sherlock there, huh.... *L*) I've had a couple low results from blood tests that my regular doctor is supposed to be looking into, however she's failing miserably at her job (don't have the time to go into THAT today!) that most likely is also factoring into all of this.
A lot of people have heard or read that fibromyalgia isn't a real condition....it's "all in your head". Bullshit. It's real. It's more than just an ache. There are some really good articles and websites out there - (I put a link to a good one where I wrote about what fibromyalgia entails.) (Here's one of those snarky comments that will go away with time, and it doesn't apply to all of you so for those of you who have done this, I'm sorry and it doesn't apply to you. When you find out that someone you love is diagnosed with something that you don't know anything about.. RESEARCH IT. Don't assume that they're ignoring people and subsequently ignore THEM. Don't ask them two months later what's going on. Use google! Go to the library! Call them THEN. Send a card. Send flowers. Do SOMETHING. But don't ignore them. They don't feel good. They're tired, they're sick, they're probably sleeping on the couch or in bed or curled up in a ball. They need comfort and support, and they need help and support. Guess what? Two months later? They STILL feel like crap, and still need help. The only difference? They have to drag their butt out of bed every day, get dressed and go to work. And the two people who have been calling them? They are soooo worn out from being the support system. The online friends, the half-dozen who they have never met that live 1000 miles away, or literally half a world away, can only do so much using Skype every other week because 20-hour time zone differences make it really hard to communicate. When a snarky comment like this is posted.....that person who is sick REALLY needs your help and support. OK, snarky comment done.)
I'm paraphrasing.... fibromyalgia is widespread musculoskeletal pain. It affects ligaments, tendons and muscles everywhere in the body. (For me, this includes the "hollow cavity" area, meaning the area below the diaphragm down to the pelvis. It was cramped, like a Charley horse kind of cramp. literally, for weeks at a time. Brilliant. But I digress.....) Fibromyalgia isn't classified as a disease, but a "condition" that causes many different symptoms. The symptoms affect all systems of the body. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as ligaments & tendons), "my" meaning muscles and "algia" meaning pain. (I find stuff like that really interesting....words fascinate me....I'm a dork *L*.)
Aside from the aches & pains that the majority of people with fibromyalgia have (muscle stiffness, soreness, burning, twitching,), it can often cause other associated symptoms such as sleep disorders, fatigue, morning stiffness or general stiffness that can last all day, irritable bowel syndrome, vision problems, nausea, cold and/or heat sensitivity, cognitive or memory impairment, anxiety, skin complaints, muscle twitches and/or weakness, depression, multiple chemical sensitivity syndromes, TMJ syndrome, memory loss and chest syndrome. These symptoms can overlap. (not an inclusive list, but a pretty complete one. NOT my list, that will come later!)
Who is lucky enough to have fibromyalgia? It can affect people of all ages, races, and backgrounds. It affects more women than men, especially during child-bearing years. (That really sucks....) The elderly and children can also be affected.
The symptoms I have that affect me daily are muscle pains, aches, stiffness & soreness, burning, morning stiffness (sometimes all day), evening stiffness, vision problems, fatigue (this is different from the chronic fatigue that I've been diagnosed with, believe it or don't *L*), nausea (yea for random vomiting!), sleep disorders, weight disorders (I've lost 40+ pounds since February), chronic headaches (not migraines...when I don't have a migraine headache, I have a generic headache), chemical sensitivity (perfumes and scents make me sneeze up a storm and my eyes itch, much more than they used to), cognitive/memory impairment, anxiety, depression, muscle twitches & weakness (drop stuff all the time, have a hard time opening windows, noticing a LOT of this. Goal ...pick up weights at the store and hopefully build some strength back up?), cold and heat sensitivity and memory loss. I think that's all..... They count the things like the needle sensations, or feeling like someone is prying my kneecaps off with a spoon as "widespread pains".
I posted the stuff about fibromyalgia first because it's the condition that most people have heard of, and it's the one that is causing the most widespread pain. http://www.fibromyalgia-symptoms.org This is a great webpage that I found. I used it for myself - I went through pretty much every page. You don't need to do that, but you might want to look at the pages for symptoms. I used it as a reference when I was writing the bits posted above.
Chronic fatigue is well......being tired. *L* A lot. "Severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions." Again I'm paraphrasing the rest. It's severe enough to keep you from participating in other activities (like....leaving the house to get toilet paper >.> ), not relieved by bed rest (eg. sleeping), extremely tired for more than 24 hours after exercise/activities that would normally be considered easy (a day at work?), forgetfulness, confusion, concentration problems, joint pain but no swelling or redness, irritability (I HATE this one, really...I do.), muscle aches (how do I decide if it's an ache from this or the fibro? I toss a dice *G*), muscle weakness all over or in multiple locations not explained by any other disorder (OK....maybe this is to blame for suddenly having trouble opening the windows? cause really....they were easy to open two weeks ago and EVERYTHING can't be from the fibro....) and sore lymph nodes. I have all of these.
IBS = Irritable Bowel Syndrome. I said I won't go into details on this. It's severe. I ran out of TP yesterday. We'll leave it at that. O.o
The myofascial pain syndrome has a lot of overlap to both the fibromyalgia AND the chronic fatigue. The part that differs is that, for me, my jaw and neck (and what feels like the back of my head) muscles are always rigid and taut. I have limited range of motion in my jaw and neck joints. It causes popping and clicking (LOUD) in all of my joints, especially the neck. I've noticed that I need to "pop" my neck and upper back - like they're out of alignment, a lot. I don't know if this is related, the feeling like it's out of alignment - I see a "regular" physician who specializes in these conditions in October. I plan on asking then. I'm guessing it is related.
The one that's the most annoying to me, and probably of the most concern is the neurally mediated hypotension. ( http://brendashue.tripod.com/nmh2.html) If I understand it correctly, my brain isn't talking to my heart much anymore so my blood pressure isn't being regulated as it should be. The hypotension causes the dizziness that I'm experiencing, and the feeling that I'm going to faint (and the potential that I CAN faint). I'm supposed to drink a lot of fluid and have a high sodium diet. The foods in the high sodium diet are exactly the foods that I'm not supposed to have because of the migraines. Until I get the tilt table test, my regular doctor won't prescribe anything. She put off figuring out where to get the tilt table test for weeks - I had to raise a stink over the phone. I have the appointment with the cardiologist on October 10th, and she decides if I get the tilt table. Then I go back to my regular doctor, who doesn't know what she's doing.
Under Pressure - David Bowie & Queen
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - gets me higher
Pressure on people - people on streets
She been around
Kicked my brains round the floor
These are the days it rains but it never pours
People on streets
People on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - high higher
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why - Ooooh
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love
Give love give love give love give love
Give love give love give love
Love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure
Some music to listen to while you read. The lyrics are apt for how I've felt lately. (If you don't like the song, read the lyrics I'm going to post at the end.....please)
These first couple of posts....blogs....blurbs? may not be the most positive because I'm going to be venting. Fair warning. This too shall pass. I kind of feel like the Black Knight in the Monte Python movie in a way though. I'm not dead yet!
First off, people keep saying, or I should say, posting on Facebook (more about that in another post), "hope your better!" or "are you better yet?". Clarification for everyone. I have multiple, CHRONIC, LIFELONG diagnosis (diagnosii? is it like rhinocerii?). I'm not going to get over this. I'm not getting better. It's not going to go away. I'm not going to die from any of it, but I'm also not going to wake up and be better tomorrow. If I'm lucky, and I pray that I am, I'll find the right combination of doctors, therapies and medications that work and I can afford (KEY...that I can afford) that will manage my conditions and bring quality back into my life. Right now, I don't have it. "It's the terror of knowing what this world is about......"
I have been diagnosed with myofascial pain syndrome (severe), chronic fatigue syndrome (severe), fibromyalgia (severe), and IBS (severe). I've been told that I have neurally mediated hypotension, 99% certain, but until I can get the testing done I won't have a confirmed diagnosis. There are several other conditions that I don't remember the names of that have to do with how my system processes and metabolizes which accounts for the severely low vitamin D levels, and most likely may play into why I have trouble losing weight (not why I gained it!). (I've been on supplements for the Vitamin D for quite some time, so far there's been a slight increase in these levels). I'd have to pull out the paperwork for the other conditions - I admit I don't remember the names. Oh, chronic migraines have been in there for years, also severe (no shit sherlock there, huh.... *L*) I've had a couple low results from blood tests that my regular doctor is supposed to be looking into, however she's failing miserably at her job (don't have the time to go into THAT today!) that most likely is also factoring into all of this.
A lot of people have heard or read that fibromyalgia isn't a real condition....it's "all in your head". Bullshit. It's real. It's more than just an ache. There are some really good articles and websites out there - (I put a link to a good one where I wrote about what fibromyalgia entails.) (Here's one of those snarky comments that will go away with time, and it doesn't apply to all of you so for those of you who have done this, I'm sorry and it doesn't apply to you. When you find out that someone you love is diagnosed with something that you don't know anything about.. RESEARCH IT. Don't assume that they're ignoring people and subsequently ignore THEM. Don't ask them two months later what's going on. Use google! Go to the library! Call them THEN. Send a card. Send flowers. Do SOMETHING. But don't ignore them. They don't feel good. They're tired, they're sick, they're probably sleeping on the couch or in bed or curled up in a ball. They need comfort and support, and they need help and support. Guess what? Two months later? They STILL feel like crap, and still need help. The only difference? They have to drag their butt out of bed every day, get dressed and go to work. And the two people who have been calling them? They are soooo worn out from being the support system. The online friends, the half-dozen who they have never met that live 1000 miles away, or literally half a world away, can only do so much using Skype every other week because 20-hour time zone differences make it really hard to communicate. When a snarky comment like this is posted.....that person who is sick REALLY needs your help and support. OK, snarky comment done.)
I'm paraphrasing.... fibromyalgia is widespread musculoskeletal pain. It affects ligaments, tendons and muscles everywhere in the body. (For me, this includes the "hollow cavity" area, meaning the area below the diaphragm down to the pelvis. It was cramped, like a Charley horse kind of cramp. literally, for weeks at a time. Brilliant. But I digress.....) Fibromyalgia isn't classified as a disease, but a "condition" that causes many different symptoms. The symptoms affect all systems of the body. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as ligaments & tendons), "my" meaning muscles and "algia" meaning pain. (I find stuff like that really interesting....words fascinate me....I'm a dork *L*.)
Aside from the aches & pains that the majority of people with fibromyalgia have (muscle stiffness, soreness, burning, twitching,), it can often cause other associated symptoms such as sleep disorders, fatigue, morning stiffness or general stiffness that can last all day, irritable bowel syndrome, vision problems, nausea, cold and/or heat sensitivity, cognitive or memory impairment, anxiety, skin complaints, muscle twitches and/or weakness, depression, multiple chemical sensitivity syndromes, TMJ syndrome, memory loss and chest syndrome. These symptoms can overlap. (not an inclusive list, but a pretty complete one. NOT my list, that will come later!)
Who is lucky enough to have fibromyalgia? It can affect people of all ages, races, and backgrounds. It affects more women than men, especially during child-bearing years. (That really sucks....) The elderly and children can also be affected.
The symptoms I have that affect me daily are muscle pains, aches, stiffness & soreness, burning, morning stiffness (sometimes all day), evening stiffness, vision problems, fatigue (this is different from the chronic fatigue that I've been diagnosed with, believe it or don't *L*), nausea (yea for random vomiting!), sleep disorders, weight disorders (I've lost 40+ pounds since February), chronic headaches (not migraines...when I don't have a migraine headache, I have a generic headache), chemical sensitivity (perfumes and scents make me sneeze up a storm and my eyes itch, much more than they used to), cognitive/memory impairment, anxiety, depression, muscle twitches & weakness (drop stuff all the time, have a hard time opening windows, noticing a LOT of this. Goal ...pick up weights at the store and hopefully build some strength back up?), cold and heat sensitivity and memory loss. I think that's all..... They count the things like the needle sensations, or feeling like someone is prying my kneecaps off with a spoon as "widespread pains".
I posted the stuff about fibromyalgia first because it's the condition that most people have heard of, and it's the one that is causing the most widespread pain. http://www.fibromyalgia-symptoms.org This is a great webpage that I found. I used it for myself - I went through pretty much every page. You don't need to do that, but you might want to look at the pages for symptoms. I used it as a reference when I was writing the bits posted above.
Chronic fatigue is well......being tired. *L* A lot. "Severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions." Again I'm paraphrasing the rest. It's severe enough to keep you from participating in other activities (like....leaving the house to get toilet paper >.> ), not relieved by bed rest (eg. sleeping), extremely tired for more than 24 hours after exercise/activities that would normally be considered easy (a day at work?), forgetfulness, confusion, concentration problems, joint pain but no swelling or redness, irritability (I HATE this one, really...I do.), muscle aches (how do I decide if it's an ache from this or the fibro? I toss a dice *G*), muscle weakness all over or in multiple locations not explained by any other disorder (OK....maybe this is to blame for suddenly having trouble opening the windows? cause really....they were easy to open two weeks ago and EVERYTHING can't be from the fibro....) and sore lymph nodes. I have all of these.
IBS = Irritable Bowel Syndrome. I said I won't go into details on this. It's severe. I ran out of TP yesterday. We'll leave it at that. O.o
The myofascial pain syndrome has a lot of overlap to both the fibromyalgia AND the chronic fatigue. The part that differs is that, for me, my jaw and neck (and what feels like the back of my head) muscles are always rigid and taut. I have limited range of motion in my jaw and neck joints. It causes popping and clicking (LOUD) in all of my joints, especially the neck. I've noticed that I need to "pop" my neck and upper back - like they're out of alignment, a lot. I don't know if this is related, the feeling like it's out of alignment - I see a "regular" physician who specializes in these conditions in October. I plan on asking then. I'm guessing it is related.
The one that's the most annoying to me, and probably of the most concern is the neurally mediated hypotension. ( http://brendashue.tripod.com/nmh2.html) If I understand it correctly, my brain isn't talking to my heart much anymore so my blood pressure isn't being regulated as it should be. The hypotension causes the dizziness that I'm experiencing, and the feeling that I'm going to faint (and the potential that I CAN faint). I'm supposed to drink a lot of fluid and have a high sodium diet. The foods in the high sodium diet are exactly the foods that I'm not supposed to have because of the migraines. Until I get the tilt table test, my regular doctor won't prescribe anything. She put off figuring out where to get the tilt table test for weeks - I had to raise a stink over the phone. I have the appointment with the cardiologist on October 10th, and she decides if I get the tilt table. Then I go back to my regular doctor, who doesn't know what she's doing.
Under Pressure - David Bowie & Queen
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - gets me higher
Pressure on people - people on streets
She been around
Kicked my brains round the floor
These are the days it rains but it never pours
People on streets
People on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - high higher
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why - Ooooh
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love
Give love give love give love give love
Give love give love give love
Love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure
Hmmm....
Good question. Not that very many people have actually asked me. It's pretty damned incredible. The majority of my friends and family are mostly apathetic about it. (sorry people if that offends you or makes you angry to hear, as the one who's been dealing with things alone, it's true.)
I had my first symptom over six years ago - my left leg started having pretty severe pains and cramps that lasted for weeks at a time. I went to the doctor after it didn't get better and he sent me to a physical therapist - maybe my left leg was weak and needed retraining. (I dunno, my right leg never looked like it was doing all the work to me...) I went to the physical therapist who was great. The first time was a general stand and walk and turn and twist and after all that she said she thought I looked fine on the initial exam, and she didn't see anything wrong or see anything that she could do or anything I needed, but the order was for 4 appointments, so did I want 3 massage treatments? Of course I said yes. When I went in for the next treatment we both noticed something funky. Whenever she'd touch me and I wasn't expecting it, it felt almost like a shock and I'd jump a foot off the table. She noticed some other things - my reflexes were off, some were exaggerated and some not strong enough. Hmmm. We did the massage treatments and she gave me home exercises for my legs, which were constantly still cramping (but she couldn't find anything that PT treatments would help). She sent her report to the doctor and I went back to him.
The doctor at the time thought it was MS (multiple sclerosis) and sent me to a neurologist. I had a MRI of the brain and neck and as there weren't any typical signs of MS on the MRI, I was told take a pill when the pain got out of control and was sent on my way.
Within a year other things started to pop up that weren't "normal". The continual pain and cramps moved to other parts of my body, my right leg and both arms, my back and belly muscles (I joke that I don't own any but I guess I do). I started to have almost seizure-like spasms, most of the time just in my upper body. Sometimes it would just be in my arms - they'd flail out, usually just one, starting from the torso moving out in a wavelike movement. Sometimes it would be more of the body, starting at the waist/hip and moving up and across my body, across my chest and shoulder with my arm flinging and my neck twitching, making my head spasm. On a good day this would only happen once, but usually it would happen for five or ten minutes at a time. Normally it would happen at night, around 10:00 PM or so. I live alone, so people didn't see it a lot. Once or twice it did happen at work. Sometimes my legs would kick out. I tried to explain it to my doctor and they always explained it away as the twitches you sometimes get when you're falling asleep but that isn't it at all. Sometimes, rarely (thank GOD), I'd get these during the day when I was out and about. Only once when I was driving. Once when I was shooting archery - I got a bulls-eye on someone elses target. We were able to laugh that one away. *G* These weird movements have come and gone, sometimes severe and sometimes not so bad, for about five years now. Right now some of the meds I'm on are used as anti-seizure meds (although that's not why I'm taking them) and interestingly enough, my twitches are peacefully sleeping.
Back to my time-line.... The docs hmmmm'd and sent me to a different neurologist who looked at my left leg, and found that I had residual nerve damage from when I fell and injured my leg several years before all this started. Eureka! He found something! It had nothing to do with why I was there, but he felt triumphant! He said the pills I was taking for the leg pain should be enough help (I'd told him that they were only mildly adequate), and sent me on my way.
I'm not sure how much later it was, but at some point, about three or four years ago, I started to have a hard time remembering words and phrases. More than what happens "as we get older" but a lot. I have hours or days where I don't want to talk to people because I know that almost every noun that i need, I won't be able to find. Or I'll lose a specific item for an extended period of time. My favorite, partly because it amuses me and partly because it's such just odd, is that I lost the word "silverware" for I don't know how long. It felt like forever but was probably 3-4 weeks, maybe a month. I knew what it was I meant, and if I was at a restaurant I'd ask for forks & knives or utensils. I was at Red Robin one day with some people from work and "utensil"s wasn't coming to the surface right way, but "cutlery" did so I asked for that. The waiter looked at me like, "freak" and said, "You mean you want some silverware?" and I was soooo relieved! I had the word back! Because until then I really didn't know that the word was missing, if that makes sense? It was the first time that I was really AWARE that I was having trouble with word finding.
I was having other problems as well. I was always sleepy. If I didn't have to work, on the weekends I'd sleep until 2:00 or 3:00 PM, and go to bed at 10:00 PM, and during the week I'd have a hard time staying awake. That changed about six months ago. Now I'm always sleepy, but I'm lucky to get 5-6 hours of sleep a night. There were all kinds of intestinal problems that people don't want to know about (and I promise I won't share!). Every once in awhile I'd get dizzy, sometimes when I stood up or bent over, sometimes just out of nowhere I'd feel faint. I had what I called "personal earthquakes". I'd be walking and it would be like the ground would jump or like I'd miss a stair. I'd lose my balance and have to catch myself on a wall or counter, and occasionally actually fall over nothing. My immune system has been incredibly weak - I've had pneumonia several times, bronchitis and other things. I found out that my vitamin D level was the lowest my doctor had ever seen - not something to be proud of. All this going on for several years, and through it all, the one thing remained..... my muscles in constant spasm.
Then I fell last July and hurt my left knee. VERY long story short... my knee cap had been knocked out of alignment and rotated, which was causing difficulty walking, inflammation and pain. I have a knack for finding doctors and physical therapists who don't know what they were doing, so after five months of mis-treatment, I found a physical therapist who know what she was doing. My left knee and leg was in severe pain at this point. I was having to use a cane to walk, and taking pain meds daily. (They didn't really work a lot, but they took the edge off.) The new physical therapist treated me for two treatments and we could tell it was really on the mend, but my right leg started to really bother me and well frankly...it hurt. At lot. She looked at it and thought that maybe it was hurting because it had compensated for the left leg so much. She worked on it and gave it an adjustment and it felt a lot better. It felt better for a couple days, but by the time my next treatment came around it was really hurting again. My left leg, on the other hand, was doing amazing. If I'd been able to tap-dance, I'd have been tap-dancing on it. Odd...... The physical therapist checked out almost 100% healed left leg and declared it better, and worked on 95% non-functional right leg. Neither of us could really figure it out. I had some exercises to do for healed leg, she said not to do them on the right leg that was now messed up. I came back for the last visit - really weird. Hmm..I hadn't injured the right leg. Left leg was better. She couldn't find anything WRONG with it. It just HURT. She's an awesome physical therapist. She figured out what was wrong with my left knee where another physical therapist and two .....knee doctor people/one surgeon (lost the word) couldn't. But she couldn't figure out my right knee, and we both knew that I hadn't hurt it.
Everything else was starting to hurt too. My hips hurt all the time. Dang, my couch was really uncomfortable because my back and knees and BUTT hurt when I sat in it. I tried the recliner. Well it's worse there. My upper back really hurts too. All the time. Hurts sitting at work. It aches, and burns....and when I move it's really tight and pops. Sometimes it feels like someones trying to pop my kneecaps off with a dull spoon. Then it feels like someones sticking a big needle into me, like maybe a needle that's about 8" long.... like when you get a Novocaine shot, into my belly or my upper arm or my thigh. And then there are the days when there's no shot or needle feelings, but feels like there are nails being driven into my joints....and all the time my calves and thigh muscles are cramped up, not quite like a Charley horse but pretty danged close. That's a constant feeling, and the skin on my calves always feels tight too.
Oh, I didn't mention the migraines! Yea!! Migraines! I've had those for a long time, before I moved up to Oregon. They started getting worse about maybe four years ago. I can't describe a migraine. What I can say is that when things started ramping up earlier this year, it got so that on a good day .... aaaaargk. My head squeezes in and my eye sockets feel smaller than my eyes. The inside of my skull aches dully, constantly. The back of my skull, where it rests on my spine, presses down and it feels like it's compressing and needs to be lifted up about four inches. This isn't a migraine.....but a microshift to the left and it could be a migraine in a second.
The thing that's really bothering me the most isn't the most painful, but it's probably the most dangerous. It's the dizziness and possibility that I could faint at any time. I can joke around about the other stuff, even if inside I'm really wanting to cry most of the time. But the dizziness.... Not so much. It started out innocuously enough, and with stuff that I've heard a lot of people have. I started to get a little bit dizzy, for a short time, when I stood up suddenly or if I leaned over to pick things up. Then pretty much out of nowhere, I was dizzy almost all of the time. I'd reach overhead to get a plate and have to catch myself because I'd be tottering. Lean over to get a pot from a cupboard, same thing. Go upstairs? Better plan on an extra couple minutes because I'm going to need time to sit down when I get there. It's got a lot worse recently. I always make sure that I walk where I can hold on to something and have one hand free. I've lost my balance (more than just a little wobble) several times in the last few days, and have "grayed out" a couple times, but I haven't actually fainted.
I was off work for six weeks in late June and July. Mentally, I can do the work but I'm a lot slower than I was. A lot. I'm worried about keeping up with my desk. There isn't room for slack, and the office manager has showed in the past that she will do everything she can to get rid of people she doesn't like and she's made it clear that she doesn't like me. I can barely afford to live on what I bring home now, so partial pay from disability is a really scary thought.
It's late and I'm starting to ramble..... :)
I had my first symptom over six years ago - my left leg started having pretty severe pains and cramps that lasted for weeks at a time. I went to the doctor after it didn't get better and he sent me to a physical therapist - maybe my left leg was weak and needed retraining. (I dunno, my right leg never looked like it was doing all the work to me...) I went to the physical therapist who was great. The first time was a general stand and walk and turn and twist and after all that she said she thought I looked fine on the initial exam, and she didn't see anything wrong or see anything that she could do or anything I needed, but the order was for 4 appointments, so did I want 3 massage treatments? Of course I said yes. When I went in for the next treatment we both noticed something funky. Whenever she'd touch me and I wasn't expecting it, it felt almost like a shock and I'd jump a foot off the table. She noticed some other things - my reflexes were off, some were exaggerated and some not strong enough. Hmmm. We did the massage treatments and she gave me home exercises for my legs, which were constantly still cramping (but she couldn't find anything that PT treatments would help). She sent her report to the doctor and I went back to him.
The doctor at the time thought it was MS (multiple sclerosis) and sent me to a neurologist. I had a MRI of the brain and neck and as there weren't any typical signs of MS on the MRI, I was told take a pill when the pain got out of control and was sent on my way.
Within a year other things started to pop up that weren't "normal". The continual pain and cramps moved to other parts of my body, my right leg and both arms, my back and belly muscles (I joke that I don't own any but I guess I do). I started to have almost seizure-like spasms, most of the time just in my upper body. Sometimes it would just be in my arms - they'd flail out, usually just one, starting from the torso moving out in a wavelike movement. Sometimes it would be more of the body, starting at the waist/hip and moving up and across my body, across my chest and shoulder with my arm flinging and my neck twitching, making my head spasm. On a good day this would only happen once, but usually it would happen for five or ten minutes at a time. Normally it would happen at night, around 10:00 PM or so. I live alone, so people didn't see it a lot. Once or twice it did happen at work. Sometimes my legs would kick out. I tried to explain it to my doctor and they always explained it away as the twitches you sometimes get when you're falling asleep but that isn't it at all. Sometimes, rarely (thank GOD), I'd get these during the day when I was out and about. Only once when I was driving. Once when I was shooting archery - I got a bulls-eye on someone elses target. We were able to laugh that one away. *G* These weird movements have come and gone, sometimes severe and sometimes not so bad, for about five years now. Right now some of the meds I'm on are used as anti-seizure meds (although that's not why I'm taking them) and interestingly enough, my twitches are peacefully sleeping.
Back to my time-line.... The docs hmmmm'd and sent me to a different neurologist who looked at my left leg, and found that I had residual nerve damage from when I fell and injured my leg several years before all this started. Eureka! He found something! It had nothing to do with why I was there, but he felt triumphant! He said the pills I was taking for the leg pain should be enough help (I'd told him that they were only mildly adequate), and sent me on my way.
I'm not sure how much later it was, but at some point, about three or four years ago, I started to have a hard time remembering words and phrases. More than what happens "as we get older" but a lot. I have hours or days where I don't want to talk to people because I know that almost every noun that i need, I won't be able to find. Or I'll lose a specific item for an extended period of time. My favorite, partly because it amuses me and partly because it's such just odd, is that I lost the word "silverware" for I don't know how long. It felt like forever but was probably 3-4 weeks, maybe a month. I knew what it was I meant, and if I was at a restaurant I'd ask for forks & knives or utensils. I was at Red Robin one day with some people from work and "utensil"s wasn't coming to the surface right way, but "cutlery" did so I asked for that. The waiter looked at me like, "freak" and said, "You mean you want some silverware?" and I was soooo relieved! I had the word back! Because until then I really didn't know that the word was missing, if that makes sense? It was the first time that I was really AWARE that I was having trouble with word finding.
I was having other problems as well. I was always sleepy. If I didn't have to work, on the weekends I'd sleep until 2:00 or 3:00 PM, and go to bed at 10:00 PM, and during the week I'd have a hard time staying awake. That changed about six months ago. Now I'm always sleepy, but I'm lucky to get 5-6 hours of sleep a night. There were all kinds of intestinal problems that people don't want to know about (and I promise I won't share!). Every once in awhile I'd get dizzy, sometimes when I stood up or bent over, sometimes just out of nowhere I'd feel faint. I had what I called "personal earthquakes". I'd be walking and it would be like the ground would jump or like I'd miss a stair. I'd lose my balance and have to catch myself on a wall or counter, and occasionally actually fall over nothing. My immune system has been incredibly weak - I've had pneumonia several times, bronchitis and other things. I found out that my vitamin D level was the lowest my doctor had ever seen - not something to be proud of. All this going on for several years, and through it all, the one thing remained..... my muscles in constant spasm.
Then I fell last July and hurt my left knee. VERY long story short... my knee cap had been knocked out of alignment and rotated, which was causing difficulty walking, inflammation and pain. I have a knack for finding doctors and physical therapists who don't know what they were doing, so after five months of mis-treatment, I found a physical therapist who know what she was doing. My left knee and leg was in severe pain at this point. I was having to use a cane to walk, and taking pain meds daily. (They didn't really work a lot, but they took the edge off.) The new physical therapist treated me for two treatments and we could tell it was really on the mend, but my right leg started to really bother me and well frankly...it hurt. At lot. She looked at it and thought that maybe it was hurting because it had compensated for the left leg so much. She worked on it and gave it an adjustment and it felt a lot better. It felt better for a couple days, but by the time my next treatment came around it was really hurting again. My left leg, on the other hand, was doing amazing. If I'd been able to tap-dance, I'd have been tap-dancing on it. Odd...... The physical therapist checked out almost 100% healed left leg and declared it better, and worked on 95% non-functional right leg. Neither of us could really figure it out. I had some exercises to do for healed leg, she said not to do them on the right leg that was now messed up. I came back for the last visit - really weird. Hmm..I hadn't injured the right leg. Left leg was better. She couldn't find anything WRONG with it. It just HURT. She's an awesome physical therapist. She figured out what was wrong with my left knee where another physical therapist and two .....knee doctor people/one surgeon (lost the word) couldn't. But she couldn't figure out my right knee, and we both knew that I hadn't hurt it.
Everything else was starting to hurt too. My hips hurt all the time. Dang, my couch was really uncomfortable because my back and knees and BUTT hurt when I sat in it. I tried the recliner. Well it's worse there. My upper back really hurts too. All the time. Hurts sitting at work. It aches, and burns....and when I move it's really tight and pops. Sometimes it feels like someones trying to pop my kneecaps off with a dull spoon. Then it feels like someones sticking a big needle into me, like maybe a needle that's about 8" long.... like when you get a Novocaine shot, into my belly or my upper arm or my thigh. And then there are the days when there's no shot or needle feelings, but feels like there are nails being driven into my joints....and all the time my calves and thigh muscles are cramped up, not quite like a Charley horse but pretty danged close. That's a constant feeling, and the skin on my calves always feels tight too.
Oh, I didn't mention the migraines! Yea!! Migraines! I've had those for a long time, before I moved up to Oregon. They started getting worse about maybe four years ago. I can't describe a migraine. What I can say is that when things started ramping up earlier this year, it got so that on a good day .... aaaaargk. My head squeezes in and my eye sockets feel smaller than my eyes. The inside of my skull aches dully, constantly. The back of my skull, where it rests on my spine, presses down and it feels like it's compressing and needs to be lifted up about four inches. This isn't a migraine.....but a microshift to the left and it could be a migraine in a second.
The thing that's really bothering me the most isn't the most painful, but it's probably the most dangerous. It's the dizziness and possibility that I could faint at any time. I can joke around about the other stuff, even if inside I'm really wanting to cry most of the time. But the dizziness.... Not so much. It started out innocuously enough, and with stuff that I've heard a lot of people have. I started to get a little bit dizzy, for a short time, when I stood up suddenly or if I leaned over to pick things up. Then pretty much out of nowhere, I was dizzy almost all of the time. I'd reach overhead to get a plate and have to catch myself because I'd be tottering. Lean over to get a pot from a cupboard, same thing. Go upstairs? Better plan on an extra couple minutes because I'm going to need time to sit down when I get there. It's got a lot worse recently. I always make sure that I walk where I can hold on to something and have one hand free. I've lost my balance (more than just a little wobble) several times in the last few days, and have "grayed out" a couple times, but I haven't actually fainted.
I was off work for six weeks in late June and July. Mentally, I can do the work but I'm a lot slower than I was. A lot. I'm worried about keeping up with my desk. There isn't room for slack, and the office manager has showed in the past that she will do everything she can to get rid of people she doesn't like and she's made it clear that she doesn't like me. I can barely afford to live on what I bring home now, so partial pay from disability is a really scary thought.
It's late and I'm starting to ramble..... :)
I'd really like a pony though.....