Karens Health Log

Log of my health issues


I got a call back from my RA doc's nurse today. The reason they didn't call is because my hematocrit level rose a little! YAY! BUT there is still a problem. I told her that my general doc said I needed to see a hematologist and get my bone marrow checked. The nurse was going to leave a note for the doc and said he'd get back with me either Monday or Tuesday. I do have my Remacade appt next Thursday but he'll be out of the office on that day so we won't be able to talk about it then, hopefully he can just talk to me about it on the phone Mon or Tues so I don't have to put this off any longer than I have to.

Still no word from Dr Booth's office so I will call today. I can't stand this waiting, but of course I'll probably have to wait all day for a phone call back, but at least they'll know I'm anxious to know the results.

I feel like I've been hit by a big emotional truck this morning, but I am feeling better than I did last night. Getting my emotions out certainly helped.

I feel pretty achy and just rotten on top of everything else today, and I'm certain its because of all the stress of yesterday (and what's been building up.) I just have to realize getting SO upset just isn't worth doing this to my health.


Dr Booth's office never called last night with my test results. This could mean two things: The lab didn't get them to him yet or he's trying to decide what to do with me. I hate waiting... I really hope they'll call me today, but they usually call in the evenings after they see patients so I shouldn't expect to hear until tonight... if that. I know I *could* call them, but since they see patients they wouldn't have time to call me until later anyway. I'm just anxious to get on with things.

I slept like crap last night, I'm kinda achy today but not too bad. Swelling in the leg/ankle/foot is still under control, although they still are swelling. It gets so hot at work in the afternoons and its not helping. I take a cool shower when I get home and it does help a bit as well as laying down and resting.


Feeling pretty good today, no serious aches and pains. Tummy is good. Leg/ankle/foot swelling is staying down and no pain in the calve. Socks still on but very hot. There was some swelling in both ankles yesterday and I imagine its from the heat. Good day so far!

Should hear from Dr Booth's office this evening with my blood test results.


I slept better last night, haven't had to take a pain pill for my leg since yesterday afternoon, and the swelling has gone down to almost nothing. I AM wearing my socks today and will keep my leg elevated as usual. Hopefully this week will be a better week as far as that goes. I'll just look really sexy in my socks and be a "hot" woman but try to stay as cool as I can.

RA is OK today, and so is the UC so far.


Had a bad night as far as sleeping goes! I woke up at 1:30 and didn't really ever go back to sleep. My leg was bothering me so I took a pain pill, and that didn't even help me go back to sleep. The swelling has gone down quite a bit, but there is still pain in the front and back of the calf. Weird. The key to keeping it from swelling is probably these awful socks, I need to just bite the bullet and wear them.


I did some research last night on the internet about hematocrit levels, etc., The amount of space (volume) red blood cells occupy in the blood is what hematrocrit is. The normal range for an adult woman is 36 to 47. I found some info on what "low hematrocrit" levels mean, and sure enough the bone marrow not producing the red blood cells is one problems. There were other disorders and cancers as well, but the bone marrow seems to fit the symptoms I'm having... and surprise, surprise, RA is one of the things that could be a factor. So, seeing that I already have RA, maybe it the only cause and not the bone marrow. So that did put my mind at ease a little.

I just hope we can get to cause so I can start getting well! I hate feeling so tired all the time. I want to be able to jump on the treadmill and exercise bike and just go! I want to be able to walk up 13 stairs without holding onto the rail for support and feeling like I'd just walked up 10 flights of stairs. I want to be able to walk more than 10 minutes without feeling like I just ran a marathon. I'll get there though... just need to be patient. But I'm really tired of it! I want my some of my energy back!!!!!! I know the reality of my health and I'll never have a lot of energy, but a little more would sure be nice.

My foot/ankle/leg was so swollen yesterday and had pain in the front and back of the calf. Last night it was so awful, it looked like an elephant foot and the pain in my calf was so bad I had to take a pain pill. It felt like it did when I was in the hospital with the clot. Bad Karen. I really have to keep wearing those socks. Crap. I did a lot of walking too yesterday and that didn't help any, yet its good for me too. I just need to get a happy medium! Its still swollen today but not as bad, but the pain is still there.


Just got home from seeing Dr. M. (my general). The blood thinner test was right on target, so no adjustments in my meds and I don't need to go back for a month! YAY! I got the actual results from the mammogram and ultrasound on my right boob, and Dr M said that nothing needed to be done for now. We'll watch it of course, but according to tests it isn't even a fibroid, its just a thickening of the tissue. Whew. Soooo... I 'm relieved, because I was prepared to say "get it out of me".

I had an follow-up appt scheduled with my gyno on this coming Monday to get the results of the mammo and discuss options, but I decided to cancel the appt. I'd have to drive to Salt Lake (take about 3 hrs off of work) for a 10 minute appt, when Dr. M. just checked it. So, one less doc appt! I gave the receptionist the details and if my gyno has any questions she can call Dr. M.

Dr. M is very concerned about my hematocrit (blood count) levels (anemia). He got copies of the tests the my RA (Dr B) doc did 2 weeks ago, which said my feritin levels were good, as well as my iron. So he said he suspects there is something wrong with my bone marrow not producing the blood. He said I really needed to be referred to a hematologist. Dr B had mentioned the last time that he may have to refer me to one, so I know its on his mind. That's one of the reasons I'm having another blood test done today to see what the levels are. Dr B's office should call me Tuesday afternoon with the results and I'll definitely ask them. My next appt with Dr B is Aug 7, so I'll push it when I talk to his office next week. The sooner I'm referred, the sooner I can get an appt with one (I may have to wait a long time to get an appt).

I can't go on feeling this tired and weak, and having such low levels isn't good. When I was in the hospital, my levels were at 19 (June 2). Giving me 3 units of blood brought it back to 31. The end of June, it was back down to 25, and then July 11 was down a bit more. We thought that perhaps the loss of blood was caused (the only cause) by my UC, but since that is getting better then there must be something else going on.

I'm trying not to stress out about it, but I'm really scared. I've had so many health problems this year, it just seems that its never going to end. I know that I shouldn't get myself worked up because the stress which will make things worse. The stress effects both my RA and UC. I know I've got excellent doctors and they'll take care of me. I'm not letting things beat me, I've come too far and been through too much to let anything beat me. Am I sounding brave enough??!! I'm trying to!! I need to take a deep breath, and just wait and see what this next test says and what we need to do from there. Easier said than done, but I'm trying.

I'm so exhausted today! I feel like the gravity of the earth is pulling at me more than usual!

Bad morning for my UC too... note to self: do not attempt to eat a hot dog ever again. No matter how good it sounds, how small of a hot dog it is, never, ever eat one again. You quit eating them before you developed UC because of what was in them so what what were you thinking?!


I think I slept better last night than I have all week! I woke up feeling quite well rested! Not very stiff and sore at all. Quiet night again for my stomach as well. My ankle and foot were swollen yesterday afternoon and last night, but its better this morning. It was 106 yesterday so I imagine it was mostly the heat and it seems the closer the end of the week comes, the more swelling takes place.

I called my gyno's office yesterday to make sure she'd gotten the results of my mammo and ultrasound, and of course she hadn't. So I made a couple of phone calls and the results should be faxed to her for my appt on Monday. My general doc had the mammo, but not the ultrasound so his office was going to call the hospital and find out where they are. I see him tomorrow for my bi-weekly blood thinner check so I'll make sure he's got them.

The hospital lab is closed today, for a Utah holiday so I can't go get my blood test for my RA doc to check my blood levels... so one more thing to do tomorrow.


Feeling pretty good today! Not much pain and stiffness this morning and there's just a little swelling in my left foot and ankle. They're looking so much better this week. I haven't even worn the socks! Stomach is liking me so far too. I only had to get up once in the night! YAY! It feels so good to be able to get some decent sleep, instead of having to get up 5-6 times. Such a big improvement!

My Mom was talking to a lady at her quilting club yesterday about me (I just love it when my Mom discusses my health problems with ladies I don't know). Anyway, in this case it may have been a good thing. This lady said that when you cut down on prednisone, you should do it by 1 mg per day, not all at once. If you do, it can cause swelling in the feet/legs as well as muscle cramps. I've had all the last two weeks, since I was cut down from 40 to 30 mg per day. I don't know if this was the total cause of the swelling and cramps, espeically since I've already got circulation probs from the blood clot and the cramps from the lasix. Interesting though, I thought.

I've got to remember to call my RA doc today. He wanted me to go in for some blood tests on Friday and I need to make sure he calls the order in to the hospital lab. I'm also going to see if I can do it tomorrow instead on my way home from work instead of Friday. I also need to call my gyno and make sure she got the results of my mammo and ultrasound for my appt with her on Monday morning. I'd hate to get all the way to Salt Lake and have them not be there. OH! I have an appt on Friday with my general doc for more blood thinner tests too. Can't forget that...


Having a mucho better day today. Not quite as sore, not even enough to take a half of a pain pill and as I'm moving around its lessening.

My left leg and ankle/ foot is looking really good today too, hardly any swelling... so I am not wearing the sox today. I know I should but its just too hot. Its almost a double edged sword.

My UC has been really good the past couple of days, hardly any cramping at all and things are still improving. Its so nice not to have *run* to the restroom and have some control. Its making life easier to live, and less stressful (always having that worry in my mind of when is it going to strike). I really think the Remacade has been the key in helping this.

Now if things would really get better and I could go off the prednisone and get rid of my chipmunk face! LOL!!


UGH... its a Monday all right! I woke up about 1am to go potty and I was soooo stiff and sore. My hips, feet and shoulders are killing me today! RA Monster is showing its ugly head today. Must be the heat bringing it out, its been so miserable the last couple of weeks.

I took a pain pill and went back to sleep for a couple of hours and was able to get up, shower (which felt sooooooo good - could have stayed in there all day I think!) and come to work. I'm gonna have to take another pain pill though, the one I took is wearing off. I'm not hurting *bad* enough to stay home in bed though. Moving around here at work should help loosen me up some too.


Its amazing what one day of staying in a mostly reclinded position has done for the swelling! YAY! Hopefully it will be a lot better in the morning too. Despite the heat, I'm going to have to start wearing the sexy white socks to work again. I don't want to, I really don't, but they help with the circulation. I'm also thinking that sitting at the computer, or just up-right is causing a problem too - maybe having my groin at such a right angle is cutting off more circulation than it should (since the blood clot went up that far).

I keep getting charly-horses in my toes and feet and its driving me nuts. I know its from the water pills (they deplete my body of potassium despite me taking the prescription strength supplements to replace it). I actually had a charly horse so bad in my left foot I had to take a muscle relaxant to get it to stop! It hurt so bad and my toes were going every which way. It looked pretty funny... despite the pain I had to giggle.

OK... I'm off to bed now and will continue to behave.

My left foot is really ugly today! So swollen and it is spreading up my leg. Don't know what the deal is, maybe too much time sitting at the computer yesterday and the heat. My right foot/ankle is a little swollen too. My hips are bothering me still too but other joints are doing OK.


My left foot/ankle/leg is still quite swollen from yesterday (and Thursday). It looked like I had an elephant foot! Ugly! So it looks like I'm back to wearing the wearing the sexy sox damnit. They're so hot!

I am tired this afternoon but not exhausted. Which shows I didn't over do things too much this morning. My hips are bothering me a bit as well as my knees, might be from climbing all the stairs yesterday at the movie theatre. My legs are still so weak from the blood clot, its amazing. I never thought a blood clot (even as huge as mine) could cause such problems and fatigue.


Note to self: Don't try and have regular pizza, the ulcerative colitis doesn't like it. Or maybe just have one small slice instead of two. Remember this for now. After the UC settles down then you can have it again. But oh, didn't it taste good? ;-) Was it worth it? Jury is still out on that one.


I got my blood test results yesterday. My iron levels are holding well, and my blood level was slightly lower, but Dr B wants to wait 2 weeks and see what it is then, to see if it drops more. The other test, of the feritin (which is a regulator of some sort - I need to look it up again) is still normal, so that's good.