Karens Health Log

Log of my health issues


My memory just really sucks. I forgot one of the things that Dr Hansen is checking me for - LUPUS. OMG. Wouldn't that just be peachy??

Yesterday's appt with the hematologist went OK, still haven't found anything out. He's got to do blood tests and I will call back next Monday for the results. Then he'll schedule me back for whatever I need to have done. He suspects its a problem with my bone marrow too.

I had a pretty good night, slept like a rock. I'm just really achy today, no *major pains*.


Woke up in a lot of pain this morning, all over hurts plus feet still killing me but knees and ankles were better. I didn't sleep well either, and decided I didn't want to push myself today, just wasn't feeling strong enough. Besides, I was only working this morning anyway since I have my hematologist appt at noon. I so took a pain pill and went back to bed. I'm feeling somewhat better now so I'm just going to relax this morning.


The pain is so much better this afternoon. I've only had to take two pain pills today - once this morning, and one at lunch time and that was 5 hrs ago. :-D I don't feel like I need another one.

Holy shit. Come on pain pill... kick in. Flares of the day: Left ankle, left foot, left knee, right foot. Left shoulder a little achy as well as my wrist. My left ankle actually started yesterday afternoon, all of the sudden it started aching as I was driving home, then I got out of my car and about screamed in pain. That flare came on so fast! The ankle is feeling somewhat better this morning, but the rest of the foot isn't. Its already swollen from the water retention so its looking quite lovely from the RA flare too.

Ulcerative Colitis is acting up too, probably shouldn't have had that salad on Friday. *sigh*


Leg is looking so much better today, not much swelling at all. Am keeping it propped up as much as possible. I slept with it elevated all night long, and even slept pretty well considering I had to lay flat on my back. I was totally exhausted. I was in a lot of pain last night, my left shoulder started to flare (feeling better this morning though), and just hurt all over. Especially my hips and knees. Moderately achy today.


No blood clots!! YAY! Whew! The swelling is due to 1) the blood thinner and 2) fluid retention (which is a complication of the clot disorder). The area of my left leg, between my mid thigh and mid calf has blood flow, but the vein has these fibers that were left over from the old clot. There's no way to get rid of the fibers, its just something that happens as the clot dissolves. They're a potential problem because blood clots can form. There are no fibers in my groin so it isn't interfering with the major blood flow and my right leg is free and clear of any clots which I was happy about too.

The tech was going to call my doc and give him the results, and if I need to do anything different than I'm doing now, he'll call me. My leg is still killing me, because of all the fluid retention, so I'm going to behave and prop my legs up and rest.

I'm a lot achier than I was earlier too, I think I'm just over doing things and need to slow down. Easier said than done ;-).

I have a problem, I think! My left ankle and leg were VERY swollen last night, despite wearing my sox for a few days. My leg has started hurting like it did before, when the blood clot was discovered. Damn good thing I'm going in for an ultrasound today. My right ankle is also a little swollen as well. RA aches and pains are about the same, not "too bad".


Another pretty good day, a little more achier than the last couple of days but its still tolerable. My left ankle has really been swelling the past few days, and have been wearing the sexy white sox, they're helping some but not 100%.

I'm going in tomorrow for an ultrasound to see how the blood clot is clearing out, and I'm certain the swelling in my ankle is connected to the blood clot.

My appointment with the hematologist is *finally* in sight. Monday! Its about friggin' time. Nothing like waiting 8 weeks! I sure hope he can figure out what's going on with my anemia. I'm sure my hematocrit levels have dropped even more. I'm getting weaker.


Woke up this morning with no *major* pain! Ahhh, so nice. I can live with just feeling achy, that is easier to ignore and function. I've got a sore throat though, and my left jaw has flared slightly.


I'm starting to see a pattern. Of course I'm always hurting (different degrees) when I get up in the mornings. I've noticed (when I'm not having flares) that things get better during the day, then about 12 hours after I get out of bed, the hurting is starting over again, so by the time I get into bed, I'm really hurting. Hmmm... interesting.

Right knee is at it again. It started bothering me again about 7pm last night. I slept with it elevated, the only position where it didn't hurt (even being still). Still hurts pretty bad this morning. Left shoulder is hurting too. Rest of me is just achy. Have a weird headache.


Made it through the day without a flare! My knee bothered me all day but got better as the day went on. Left shoulder started to ache, but didn't go beyond that!

My right knee is still bothering me quite a bit, it kept woke me up everytime I moved it last night. I'm still achy everywhere else, but not too painful. Ahhh, feels good not to be in so much pain. Still working on getting de-stressed. Feel very fragile still but getting stronger.


Woke up with my right knee flaring, but the rest of me wasn't hurting too bad. Hope its going to be another relatively good day! I plan on getting a lot of rest and relaxation. Need to work on my stress level though. Easier said than done! I know stress has been a huge factor in all my flares so I need to squash it.


The pain is so much better tonight! YAY! Resting (while studying) all day did the trick.

UGH... can hardly move!!!! I hurt as bad as I did last night. No particular flares just hurting bad all over. I'm sure all the stress from the drama yesterday has brought a lot of this on. The stress is so not good for me and I wish it would all just end, but its been going on for 2 years and its not going to go away over night.


Went to see my general doc today to have my blood checked for the blood thinner levels. Things are good there, not too thick, not too thin... just right. LOL! I'll stay on the level of meds that I'm on now. We scheduled an appt for next Friday to have a follow-up ultrasound done on my leg to see how the clot is clearing out. He felt so bad for me (my RA and anemia), he asked if I'd like to postpone the ultrasound for another month or so until my RA settles down, but I just laughed and said that an ultrasound was no big deal and I'd rather get it done soon and see how the clot is dissolving. I go back to see him in another month to have my blood checked again.

I am feeling like shit tonight. Every joint on right side from the bottom of my foot all the way up to my jaw has flared. So bizzare... and I'm sitting here shivering. Not really cold, just have the shivers. Could be the pain. I took 2 pain pills (pain is *that* bad) about 45 mins ago and they're barely taking the edge off. Man... where's a morphine drip when I need one. LOL!! Just for 5 minutes...

Another really sore day... hurting more in other places, less in places from yesterday. Hands/wrists are really bothering me today. When will this end?! UGH!!!


I was hoping to go without a pain pill this morning, but it ain't happening. I'm hurting all over and its not getting better as I move around. I took a really hot shower this morning that felt so good, but it didn't help loosen my joints up as much as I'd hoped. Cold weather is setting in and I think that's got a lot to do with it, although it does feel soooo good. I like the cooler temps and Fall.


HUGE storm came through today! Could be why this flare is so bad??

Things got a little better yesterday morning and afternoon, then about 5pm my left knee, left hand/wrist, right shoulder flared big time. I was in class and we took a break at 5:15 and it couldn't come fast enough - I HAD to take a pain pill. I was hoping by the time we got out of class at 6pm, the pain pill would be working - or at least take the "edge" off... no such luck. Driving home was horrible, using my clutch was killing my knee. Any bending at all sent sharp pains through my knee. I had tears rolling down my cheeks, it hurt so bad. I got home about 6:30 (stairs were fun) and took another pain pill. I did a couple of things, then got in my pj's and was in bed by 7pm. Pain pills still not working. It was torture even getting in bed! I actually screamed out loud when I tried to put my leg under the covers, because I had to bend it. Tears rolling down cheeks again. Then as I was bringing my other leg up there was pain in the crease of my leg (groin). Holy shit. I couldn't move I hurt so bad!! I ended up taking another pain pill about 8pm. Finally got to sleep about 9pm. Pure hell.

I took another pain pill about 2:45 this morning so I would be able to shower and get dressed this morning. The pain had subsided to a tolerable level but am still hurting quite a bit. I *should* have stayed home, but I've got meetings today, an accounting test that I cannot miss. Damnit.


*groan* I had one good day... now it looks like I'm headed toward another seige of flares. I feel horrible today. I'm not screaming in pain, but definitely need a pain pill. My knees are flaring as well as both my hands. Having problem with the front of my left leg, right in the crease. It didn't like the clutch. My back is also bothering me. Crap.

Throat is *really* sore too, it started getting bad last night and was worse this morning... yup, flares are coming.


Made it through the entire work day without a pain pill! YAY!! I'm starting to get a sore throat and I hope it doesn't mean another flare is coming. *go away*

I went to the dentist this afternoon and my teeth and gums look really great! They couldn't even tell I was on any of the meds I'm on! The one part of my body that isn't falling apart. ;-)

Wow... last night the pain over all started subsiding!! This morning I got out of bed with very little pain. Still achy and sore, but not enough for a pain pill! YAY!! I will so enjoy this day!!!


UGH. Another crap day... I'm so tired of hurting! I can't do anything without feeling some degree of pain. Its dragging me down and I'm fighting to stay above it all. Its so hard!

My stomach isn't liking me today, probably having pizza (tomatoes) two days in a row.


My right hand/wrist started to flare today while I was doing my accounting homework assignments (how convenient, huh?). So I took a pain pill, tried to ice it and it started hurting more immediately so I tried the heating pad. I fell asleep for about an hour and when I woke up, the flare had stopped and the pain had subsided some. Enough for me to finish the homework anyway! I could write. I spent the rest of the day with the heating pad on my upper back and right shoulder. It felt quite good. Its so strange that all summer, ice has been the thing to help and not heat. Now that it was a little on the cool side today, the heat worked.

I've come to the conclusion that my form of RA likes to be spontaneous and keep me guessing. I never know what to expect. I hate that.

Woke up at 3am and couldn't go back to sleep. Still hurting, but not quite as bad as last night. Back/spine pain has gone up into my neck and made it stiff and sore. I hate that! I've got a bad case of the chills right now, not sure if its because its cold out or if I've got a slight fever from my Remacade treatment. Brrrr!


Oh my hell. What a day. I hurt just about everywhere. Arms/shoulders/elbows/hands, hips are still hurting. Hands not quite so bad. Now, my left side of my jaw has flared and my spine is hurting between my shoulder blades. My spine has never flared before... isn't this lovely?! Its the weirdest feeling. I took a pain pill about 2pm, fell asleep for an hour or so and when I woke up I was hurting so bad I didn't think I could get out of my recliner! Once I was up and moving a bit, the pain did decrease some.

I probably over did things today, between cleaning and shopping, carrying things, etc., Maybe that's why I hurt soooo bad tonight. I shall behave the rest of the night.

Agony... I was in pure agony last night by the time I got home. I even had to take a pain pill before my test at school, which wasn't the smartest thing, but I couldn't even hold a pen! Then driving home was fun, my hand hurt so bad when I shifted the gears. I took another pain pill when I got home and got some good sleep for a change. I got up at 2am and took another pain pill, and will be taking another one shortly, after my morning meds settle. Hands, arms, elbows, shoulders, and hip again.

My ankles are really swollen too, so having to wear the sexy sox. Had a hell of a time putting them on this morning, and will have to take them off and put them back on later when I shower. Damnit! Not looking forward to that. They're so hard to put on and take off because they're so tight.

I'm still having a bit of a pity party for myself, I'm just fed up with feeling so shitty all the time. I've got a lot to do today. I'm going to attempt to clean - probably will be a really light job though, then I have errands to run. Maybe I'll feel better after getting out with Mom.


I just got my blood test results from yesterday. My hematocrit (red blood cell percentage) level has dropped even more. Its now 24.9 down from 28. *sigh* My appt with the hematologist isn't until Sept 29 and I'm sure it will be even lower by then. They don't want to give me another transfusion until they can figure out what's wrong so I'm going to have to feel like shit.

My C-Reactive protein was up, which shows the level of inflammation I'm having. In 4 weeks its gone from 0.8 to 3.3. Its not good, but its not as high as its been, back in May it was 11.8. It says, Yes, Karen is having a lot of flares. Medical proof. It also shows something with my kidney function, but it was OK.

I'm getting to the point that I feel the need for a Karen pity party. I'm tired of being in constant pain, tired of feeling like shit, and just plain tired!!! I need to let myself have a pity party, that's one thing I've learned. If I don't, it makes matters worse and causes more stress. I'll have my pity party, get the aggravation and frustration out and feel a lot better.

My hip is so much better this morning. I woke up at 1am, hadn't moved a since I fell asleep (still propped up on 2 pillows and had my glasses on). I moved and gasped out in pain. My right arm/elbow all the way down to my hand hurt like hell. Once I moved it, it started to throb so bad I took 2 pain pills. Never did really get back to sleep. Pills are helping, thank goodness!

I'm feeling a little oogy and really tired, probably from the Remacade treatment yesterday, I always feel really washed out a couple of days after. My tummy is a little yucky too, probably from the pain pills and not taking them with a lot of food (just had a yogurt).


Dr B increased my Remacade dosage from 5ml/Kg to 7ml/Kg. He saw how swollen my joints were that are flaring today and so he said to just hang in there, hopefully the increase of the Remacade will help. He said he's not too impressed with the pain patches as far as his RA patients since they don't absorb into the joint as well as they would the muscle and other tissues like for your fibremyalgia. So he just refilled my other meds. He's pleased that my Ulcerative Colitis is still slowly getting better too.

I told him that I'd gone from 20 mg to 10 mg of prednisone for the past 9 days or so and he wasn't mad at all! He said that he would have preferred to me wait until today but understood me wanting to get off of it. He said for the next week to stay on 10 mg, then go to 9 mg for a week, then 8 mg for a week, and so on until I'm off of it. I'll be soooo happy to get off of this! The reason for tapering off so slowly is so my adrenal glands will have a chance to get used to working again on their own.

My hips and other joints are feeling a lot better tonight. I can actually get up from a chair without wanting to scream.

Holy pain Bat Man! My hip is sooooo bad today! I want to scream out every time I get up from sitting, sit back down, or bend. It hurts to walk but gets better after I get moving about. The pain pill is controlling my hands, wrist and shoulder pain pretty well.

Dr. Booth can see what my flares are doing today at my appt for my Remacade treatment so hopefully he will increase the dosage to the max or close to it. I'm going to ask him about some pain patches as well, to see if they're an option for me. I am almost out of my regular pain meds too.


Mr RA is attacking me big time. Right shoulder still, right hip, right wrist, right hand, left hand. Holy shit. Took a pain pill before class and just took another one and I'm heading to bed with some ice.

Woke up about 1am in quite a lot of pain. My right shoulder, right wrist and left hand were flaring - mostly my shoulder. Then I got out of bed and the rest of my body was rebelling. I had a really hard time getting back to sleep after that, couldn't get comfy. I'm waiting to take a pain pill until my morning meds settle. Its going to be a long day, I have my night class after work so I can't go home early. Hopefully it will be like yesterday though, and get better as the day goes on. Note to self: think positive - it will get better.


Roller coaster pain today... now its improving. :-D

Funny how things can change so drastically in the space of just over an hour. Pain is increasing, mostly in my shoulders, hips and right wrist. So bizzare.

Not feeling too bad this morning, quite achy but no major flares. My stomach on the other hand is grumbling and rumbling - hope all hell doesn't break loose. I had some cake last night with yummy frosting (full of fat!) so maybe that's why it isn't liking me.


Almost got through the day without pain (relatively speaking!)... my right shoulder is starting to act up. I'm going to try and nip it tough and ice it now.

I found a shoulder heat/ice pack holder in one of the Publisher's Clearing House fliers (I usually don't order things from them, just enter contests but hadn't seen anything like this before) and I can't wait for it to arrive. Wish they'd hurry up, it looks like it would work a lot better than just the regular ice packs and I'd be able to walk around with it on and not have to lay there.

Wow... got out of bed this morning without much pain at all! I'm really tired and drained but no pain! Feels soooooooooooooooooooooo great!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


OK... had to break down and take something. I kept getting cramps in my lower legs and feet so I took a muscle relaxant, which also helped my hips a little. Not much but a little. Hands are feeling better tonight. Its so weird how it keeps moving around my body. I haven't had a major flare in about 4 days so that's an improvement. My throat hasn't been sore for 3 days. Good sign.

Hips really bothered me last night, even to be sitting. My right hand started hurting too. Got a good nights sleep and woke up feeling a little better. My hips didn't hurt so much, but then my hands were hurting.

As the day is progressing, my hips are starting to bother me again. When I get up from a chair it takes me a few steps for the sharp pains to ease. I'm trying not to take a pain pill, because I need a clear head to study.


No major flares this morning! YAHOOO! I'm very stiff and sore, but it seems to be getting better as I move around. I had a bit of a stomach ache this morning, maybe something I ate yesterday but can't think what it would have been. Maybe stress from my school test and the stress I've been under is catching up with me.

I took only 10 mg of prednisone yesterday and am doing the same today... I'm getting off this stuff. I hate it!


I'm actually feeling better as the day goes on. My shoulders just give me grief when I reach back or forward too far. I'm feeling tired though, both weak and sleepy. I had a hard time climbing 5 stairs at school today, of course the stairs are steep, by the time I reached stair #4 my legs felt like they were going to give out on me.

Right shoulder calmed down, left foot is better (still not 100% pain free but I'm able to walk instead of hobble, left shoulder and right thumb joint flared last night - pain started and were full flares within 30 minutes. I slept (well sort of slept!) with ice packs on both all night and both have calmed down some. They're not killing me, I haven't had to take a pain pill this morning. I will wear my elastic hand brace to help my thumb.

Stomach has really been behaving the past couple of days. But then again, I've stuck to my bland diet. LOL!

I'm really tired of the side effects of the prednisone. I'm sure that Dr Booth is going to lower my dosage (or at least I should say I'm guessing because he's mentioned he wants me off) next week when I go in for my Remacade treatment. Its been 4 weeks that I've been on the 20 mg dose and I've decided today that I am going to start tapering down on my own. I just can't stand the swelling in my face and upper body as well as having the munchies all the time. I know this is frowned upon, but I gotta do what I feel is best.


OK... now my right shoulder is starting to give me fits... damnit!

I woke up about 1am with my left foot feeling like someone had smacked it with a sledge hammer. It was absolutely fine when I went to bed last night. So, I got up, got my ice pack and took a pain pill... I was thankful to be able to walk when I got out of bed this morning. Well, if you can call it walking, more like hobbling. It hurt like hell to drive with my clutch too.

Still have the sore throat. I really wish I could figure out what the link is between the sore throats and my flares. I wonder if anyone else with RA has this happen.


Still no flares, my left hand is actually looking better this afternoon. But... the sore throat is getting worse, despite drinking a lot of water. Its hurting right back by my right ear.

I sure hope they increase my Remacade next week - I wouldn't even be upset if they gave me the full dose of 10 ml per KG - give it to me with both barrells. I want to zap this shit.

Not feeling too awful this morning. YAY! Left hand is about the same, no better but no worse either. Throat isn't quite as sore either, so it looks like this flare fizzled out.

UC is behaving for the most part, still have a bad episode from time to time. Thre frequency has been cut in half. I think I suffered a slight set back when they decreased the prednisone, but its started to improve again.

Note to self: Keep a positive attitude. I can't let any of this drag me down, things WILL get better.


Here it comes... sore throat is starting up again... left hand is still flaring, but not as fast and hard as the flares have been coming. There is visibly swelling around my two middle finger knuckles. Will ice it some more.

Didn't feel too bad when I got out of bed this morning, took a shower right away while I was waiting the 30 minutes after taking a pill and before I could eat breakfast and take my other pills. Slowly my left hand is starting to flare, right in the middle. I've put my hand brace on and will start icing it. My feet are still hurting, but not as bad. Hips are feeling pertty good as well. Hoping today is a pain pill and muscle relaxant-free day!