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This will show our fight with Fibromyalgia, so others can learn that it's real. |
This blog will chronicle my battle with Fibromyalgia, sometimes comparing it to the battle my wife, Kenzie  has with the same illness. Many don't believe it's an actual illness, though its existence is recognized more and more in the medical community. I'm hoping that by shedding some light on what it can do to a person we can make others aware that it is indeed real, and that it can hit anyone of any age at any time. It's not deadly, by any means, but it can drastically change your life. It can be a real and aggravating pain in more ways than one (pun intended). MANY more ways.
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That's right.  Tuesday night, I was not able to wake up Kenzie just before 8:00 so we could watch NCIS together. So, it was a good thing I ended that blog when I did and set up the tape. When I tried to get her up, she would say (slightly mumbling and eyes still mostly closed ) that she was getting up in a minute. But, by the volume and tone of her voice, I knew better. I started the tape. She woke up about 9:30. Luckily for us, Derek didn't have to go to work that night. We still have to watch the tape. It will get done. That was too good a show to miss. The last couple days, Kenzie's left knee and ankle have still been playing up. And tonight, it's her back. Right now (12:15 AM Saturday), she's still in her recliner, and she told me that she'll probably sleep there tonight because her back is really hurting, and keeping it at something of an angle tends to often help the pain. We will see if she makes it to bed tonight, but I doubt it. She was almost asleep right before I came in here for the night. So, we shall see. |
| Not quite, but almost. I haven't been to work yesterday or today. No, not medical issues as you might think, you all can relax about that. I've been at a training site about 15 minutes away from the office, taking a two-day course, learning how to use a new software package to expand my options at work. But, that did bring the proverbial drowsiness after lunch. Sheesh. That afternoon session was a little tough, but I made it. The last couple days, we've had a complete reversal of weather. From the teens or worse for a night time low, to a high today of about 48. And wouldn't you know it? After all that snow the last couple weeks, it's gotta pour down rain on my way home from that class. Which means a ton of fog, both now and tomorrow morning. Lovely weather to drive to work. But, it does beat the 0 degree weather, hands down. Thankfully, we've not been hit with the major Fibro pains we COULD get from weather changes like this one. But, there's always something. The last cuuple days or so, Kenzie's left knee and ankle have been playing up, giving her a new challenge at times. And I've noticed that recently, after being online, whether here or my other email ID, getting out of this chair I tend to feel my age for the first 3 minutes or so, till I get moving a bit more. As for today, Kenzie shut down again, about 6:30. I'll be getting her up at 8:00 so we can watch one of our favorite shows together, NCIS. That is, if I can. There are times when no matter how hard I try, she doesn't budge. When that happens, I let her sleep because it's obvious she needs it. Then I tape the show(s) we were going to watch so we can watch them together later. And me? Coming off that class, I had so much going through my mind that I totally forgot that my small group from church was meeting tonight. Didn't think of it till about 1/2 hour ago. I hate Fibro Fog.  . Well, I better get the VCR set up in case I can't get her up at 8:00. See you all later! |
Yep, I did it again. Time got away from me on this.  I apologize for that, and hope to make it up to you all with a few things Kenzie reminded me of tonight that need to go here. One night this past week, Kenzie's fatigue caused her to shut down early, before the end of one of our favorite TV shows. CSI NY I think. She was in her recliner in the living room as we watched it, I was in my rocker nearby. With about ten minutes left in the show, and for only the second time in the last 4 months or so, she shut down. Went right to sleep. When the show was over, as the 11:00 news began, I gently made sure she was awake, and told her she should come to bed, that the temperature was too cold for her to sleep in the recliner. She'd just gotten over a bout with bronchitis and I didn't want that, or anything else, making her sick again. She tells me calmly that she's still awake, and would come to bed later. I kind of knew better from the tone of her voice, but I said, "OK, I'll check on you later." At 12:30 AM, I checked on her again. She said she was still awake, and she sounded fairly awake, too. I proceded to tell her what had happened at the end of the show that she didn't see. I told her how the girl that was in the bathtub with all the rose pedals in the water died. I also told her, about an unrelated incident, where a wife with a past head injury suddenly failed to recoginze her own reflection in a mirror. Thinking the woman she saw was an intruder, she lashed out violently. In the process of lashing about, the lady accidentally sliced her own husband's wrist. The husband dies from his injury, and his wife insists she didn't do it, that it was the lady intruder. Kenzie responded with a comment about how intricate those story lines had been (which was true), and told me she'd be in to bed in a little while. About 2:00 AM, I checked once again, and found her sound asleep - again - in the recliner where she'd been since 10:00. The next morning, I had to get her up so she could pick up Derek from work at 6:45 AM. No problems there. But when we talked about all this that night when I got home from work, she remembered absolutely nothing about either off the two conversations we'd had in those early morning hours. Not the one at 12:30, or the one at 2:00 AM. I had to tell her all over again how the two victims in that show had each met therir end. Needless to say, we were laughing the whole time. And we have to say that Kenzie gives a whole new definition to "talking in your sleep". But we sure enjoy this, and all the other little "idiosyncracies" that fibro can bring to a person's, and a spouse's, life. And trust me - we'd MUCH rather have a sense of humor about all of this than be the type to get upset or depressed about it, and have that negative attitude affecting our quality of life. Nope, we'll just enjoy those situations, and any others that come our way, and laugh together about them. It'll help keep us young, and make our life much more rewarding. On my end, within the last couple days, the pain that had started all of this for me so many years ago, that resulted in my being diagnosed with Fibromyagia (known then as Fibrousitis), was back for about 3 hours. It felt like my left elbow was hurting for no apparent reason. Not the muscles or anything - this truly painful feeling was as if the pain was in the BONE itself. No position was comfortable, the pain was sharp and constant. Thankfully, it went away on its own those 3 hours or so later. I really was not in the mood to get another cortisone shot, even with as good as it took care of that pain originally. I didn't want a useless arm for the rest of the day. See, with the cortisone shot, your arm feels like it's heating from the inside, and that heat travels from the point of the injection SLOWLY down your arm, to the tips of your fingers. And that in itself hurts a bit, and no position eases that ache and burning sensation. None. When I got this pain originally, some 30 or so years ago, I was driving a 4-speed manual transmission Mazda 626. THe ache, and now the fire, were in my RIGHT arm then. Try driving a stick shift with only one hand, with the gearshift on the FLOOR, on your right side. The one hand you can use is the farthest one from the gearshift. Shifting and steering all with one hand can be a very interesting challenge, even moreso when it's the "wrong" hand. I wouldn't recommend it. That arm burned the rest of the day, up until I fell asleep that night. But, sure as shootin', when I woke up, all the pain was gone, including the original source of the problem. If I remember anything else from the past 12 days or so, I'll add it here soon, and keep things up to date at the same time. And Kenzie, honey, if you think of anything that we've overlooked to this point, feel free to jog my memory so we can get them in here before they're lost forever. Some of those unexpected moments are some of our best fun, and should be shared. Thanks for reminding me of the ones I put here this time, sweetheart. My bet is you won't remember me coming to bed tonight. You haven't made a sound in about an hour. See you all ASAP. I'm off to bed. |
| Kenzie had told me a couple times in the past that with Fibro the more you exert yourself physically, the more you hurt later. Last night I proved the truth of her statement all over again. Tiffany and I went bowling. We bowled 16 games. By the end of the 15th or start of the 16th game, I was almost - but not quite - walking up to the line, not running, then putting all the force I could muster behind the ball using just my arm. Momentum was out of the question. By the time we got home afterward (roughly 25 minutes after the last game, after we'd turned in her shoes, paid for the games and driven home), there wasn't a part of me that didn't hurt. My back, my knees, my arms, my legs. All of it. I walked up the front walk from the driveway like a 90-year-old man might do. Short strides that looked like every one of them took all the effort I had. Because they did. And, for those of you old enough to remember the TV series "The Real McCoys", which starred the late Walter Brennan as the grandfather, Amos, here's another visual for you on my condition. Amos did this with every step he took, but I did it only going UP steps. One built into the front walkway, and the other from that walk to the porch. Each time I stepped up to that next step, my motion was EXACTLY like grandpa Amos McCoy: step up with the right foot, and as the pressure is applied to that foot my left arm bent at the elbow and my left shoulder raised up as I took the step. I was going up a step using the same limp that Amos McCoy walked with in every step he took. I realized that right after the first of the two single steps had been conquered. And I grinned. The memory of the fun of that series kept me from feeling like I was aging before my time and reminded me of Kenzie's comment about the "down side" of excercise when you have fibro. Even walking to the bed later last night, and climbing INTO the bed hurt like crazy. But, thank the Lord, I didn't feel much if any of that pain when I got up this morning. I figured it would be even worse after having a few hours to make the muscles stiff, and all that. But thanks to Him, I lucked out. I shared a bit of a revelation with Kenzie before we crashed last night. I had told her before going bowling that the exercise I got doing that, much like the deep knee bends I need to do about every 2-3 hours when we travel, helps my knees; takes the pain away for that 2 hours or so. But I've noticed, too, that after reaching a certain level of exercise, Kenzie's fibro premise kicks in, and I hurt MORE, not less. I'd love to have a way to figure out wherre the cutoff point is: the point where the benefits of the excercise taking the pain AWAY from my knees, and my body is suddenly replaced by things getting MORE painful, forcing me to stop the exercise. I have noticed, too, that another true fact of fibro rears its ugly head at those moments of "transition": the fact that the added pain saps your energy even faster. That's why I was walking like the 90-year-old man, and taking steps like Amos McCoy when I got home. It was the best mobility I had at the time; the ONLY mobility I had at the time. I don't think Tiffany and I will be bowling 16 games again any time soon. Maybe 5. There was an upside to all this pain, however. I had my highest, or at least second-highest score since she and I started bowling a little over a year ago (137), and she did better last night that she had in a long time, even beating me the first game. That was a big morale booster for her after a few outings in the past when she got so frustrated with gutter balls that she wanted to resort to the using the bumpers. Last night she didn't need them. So, we both had a bright side to the experience. We'll have to see what next time brings. |
GRRRRRRRR!!!!! BRRRRRRRRRRR!!!!! You read it right. LOL It's ridiculously cold here, and only getting worse over the next 4 days or so. So I borrowed two of Kenzie's favorite words. They're the best to describe the situation around here right now. Because the bitter cold (it's going down to about 8 above tonight, and about 0 tomorrow night) brings out the worst in my joints, and a few other pains as well. And THAT gets frustrating. Hence, the borrowing of Kenzie's key words. And the pain doesn't stop just because I get into heated areas, either. It might after a few HOURS, I'll have to see if I can remember to notice that and comment on it here. But my knees still kill me when I'm moving to either sit OR stand. Especially when I go to stand up from a sitting or kneeling postion. They both scream. It has to be the extremely cold weather that put things "over the edge" on this. The last week or so, since my previous entry, was not perfect, but in comparison to a typical week, blissfully (relatively speaking) pain free. Now I'm paying for it. Bigtime. Well, I've got a desk to clean off, so I'll try to come back here tonight, or when I'm resting my back while cleaning off the top of this desk. |
| Well, KINDA low, anyway. I noticed it's been over a week again, since my last entry, but at least it isn't two weeks like the last time. I've had a few relatively easy days recently with the fibro. My legs for the most part have not hurt as bad as usual the last few days, though that pain was always present a bit at night, but in different places and not dominating things. The past day or so, maybe 2-3 days, my back has been the main issue. I've had a few consistent pains in different places, but not the usual major one that makes walking a painful proposition. Just bending and other similar movements. The only consistency I've had the last 4 days or so has been my knees after being in the cold outside air going to or from work. Once I get in the office and into the warmer air, THEN the pain kicks in (or at least the frigid air didn't let me feel it outside) and they bother me for a number of hours after that. Thankfully they've usually calmed down before I leave to come home again. Interesting thing is, after the exposure outside while coming HOME, the knees don't usually hurt as bad once I"m home as they did at work. My thinking is that there's a threshold temperature somewhere here. A "cutoff" point if you will. Below that outside temperature my knees will hurt once I'm indoors. Above it, and they aren't affected enough to hurt. I need to see if I can figure out what that temperature is. The perfect solution? A portable outdoor thermometer. Kenzie's going to make appointments for both of us with a rheumatologist, and hopefully we can get some things determined with that kind of help and know more of what's going on. My dad's got arthritis, so I've been wondering for a while it that's what's bothering my joints on occasion. Maybe Kenzie and I can both find out things we didn't know before. We shall see. |
| ... that the chronic fatigue part of Fibromyalgia is as random as its other symptoms. The fatigue is more random for Kenzie than it is for me, but neither of us has a pattern. With Kenzie, it can happen almost literally at any time. She's "shut down" as the two of us like to call it, in the morning, in the middle of the day, in the evening, and even in the midst of a crowd. Many of these have, I believe, been documented in her own blog. One of those I know is there: the weekend the three of us (including my daughter Tiffany) were at church, watching the Bengals game on the big screen.after a parking lot "tailgating party". About the middle of the second quarter, Kenzie leaned over and told me she was going to shut down. Within 45 seconds, her head was laying on the table in front of us, her eyes shut. She woke up sometime during the third quarter, having slept every minute of the intervening time, roughly about a half hour, maybe a little more. With me, it's been mainly in the evenings, as I've said previously, which has been the big part of my problem with getting these entries done. But even so, it hasn't been consistent with me either. There have been a number of weekday evenings, and a number of weekends when Saturday afternoons would find me napping for up to about 5 hours. Nope, there's no consistency to when the fatigue will striek and shut you down. And we're living proof of that. |
| In my last entry, I said 'more later'. Well, here it is. I kind of saw this coming. LOL In my last entry, I also said I took a nap for about 4 hours. That worked. To the point where I was able to watch the latest in a wonderful movie series with Kenzie twice in a row. It was "In the Shadows", the latest in the Mystery Woman series on Hallmark Channel. If you haven't seen any of this series of films, you should. They're wonderful. For those that are wondering, the two lead characters are Samantha Kinsey, played by Kellie Martin ("Life Goes On") and her associate Philby, played by Clarence Williams III ("Mod Squad"'s character 'Link'). We watched it twice because Kenzie had to take Derek to work just before the first hour was over, and she missed some of the important scenes. So, since Hallmark was running it back-to-back, we decided to stay up and watch it again so she could see it without interruption. The point? Not only that the movie was that good - it was - but that that nap I had earlier came in handy. LOL It's now 2 AM Sunday morning and i'm just now getting to bed. Thankfully I'll get a full nights sleep since we've already decided we're going to the LATE church service tomorrow. LOL. The nortriptylene is kicking in, so I'd better get to bed. See you all next time. And hopefully changing the time of day that I do these entries will let me keep up with them better. 'Night, all! |
| My apologies to our loyal readers. It's been two weeks since my last entry. Or, it would have been two weeks tomorrow, to be exact. Most of the problems during that time were medical, in one way or another, and, of course, the Fibro was a big part of that. Things were a bit more varied than usual, though. First off, the biggest single reason for the gap in entries has been, it appears, the fatigue side of the Fibro. More often than not I encountered my version of what Kenzie and I have taken to calling "shutting down". Where the fatigue part of the Fibro suddenly says, "You're going to sleep whether you're ready to or not". At least it's consistent with the two of us. She had told me a couple times that she can tell a bit in advance when her body was going to "shut down". At least I have the "luxury", if you can call it that, of having the same warning coming my way. We'll be watching the last 15 minutes of a favorite program. Sometimes it will be as early as 10:30 P.M. All of a sudden I start yawning like crazy; every couple minutes another one comes. And after about the 2nd or 3rd one, I feel like I could lay my head back against the back of the rocker and just go to sleep right there. And I know that would work, because this is the same rocker I always slept in when my sinuses were too clogged to let me breathe laying down. This rocker was a haven, then. I could actually get a sound sleep because gravity kept the sinuses drained enough for me to breathe with my mouth shut. So I knew I could just as easily sleep in it now. Like Kenzie could sometimes manage to stay awake long enough to get 1, maybe 2 small things done before actually "crashing", sometimes I could too. I just couldn't count on that every time, and I doubt she could either. For me, that meant the time I'd usually use to make these entries was gone for that night. Thing was, in these past two weeks, that happened quite a bit, as the dates on these entries will attest. And that fatigue is an equal opportunity pain in the butt. It doesn't care whether it's a weekend evening or a weekday evening. It doesn't play favorites. I may have to rearrange my timing for these entries, and make them earlier in the evening, while watching the early news or something. I'll see how that works out. That's where Kenzie has an advantage over me - she can make her entries any time she's on, even while I'm at work if she chooses to. On other fronts, Kenzie's sore throat left and then came back again. She's detaled that in her blog so I won't repeat it here. Suffice to say she's thinking about a repeat doctor visit this week. I can't blame her. She even had a low grade fever this afternoon. This afternoon? Right. Because the fatigue hit me again. I worked for 3 hours this morning, 7:30 to 10:30, came home and immediately knew I was going to "shut down". I laid down at 12:15, woke up about 4:00. I'm more awake right now than I have been all day. So much for other plans. I'm finding out for myself what others with Fibro, Kenzie included, have said for years - that gloomy weather sets it off. And after this last two weeks that's more than been proven around here. We've each had our turns at shutting down.Thankfully, I haven't had as much leg pain, or as wide a variety of them these last two weeks either. But, a new wrinkle has been added. My doctor told me to start watching my blood pressure at home and to come see him if i got 3 readings above a certain level. Well, I have an appointment with him Wednesday afternoon. My bet is it's time for the medicine for that, too. Speaking of meds, I have to run to the pharmacy and get Kenzie's latest two. More later. |
| The last 48 hours haven't been nearly as troublesome for me as they have for Kenzie. As if the Fibro wasn't enough in addition to her chronic back pain and knee pain, now she's picked up a viral infection that stole her voice and keeps her throat more sore than it's ever been. And between that and the fibro, she's been doing a lot of sleeping lately, which is perfectly understandable. It's the infection and the fatigue that make her sleep (and possibly the effects of that killer pain pill), but at least she gets the added, total relief from the pain that only sleep can give. She has said it a lot more effectively than I have here. And with her classic humor as well: "Each Day Already is a Challenge"  . I will say one thing before you go to read her entry: she loves to talk - you'll see that as you read - and I miss her talking, and our seemingly random-subject conversations. We both have our reasons for wanting this thing to be healed and leave her alone. |
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