It's About Time

I cannot believe it has been this long since I posted here. What a roller coaster ride the last three months have been.

It started when I had surgery on 10/20 to remove my ovaries due to endromitriosis and scar tissue. There was so much scarring she had to open me up again. My ovaries were attached to my walls and it started to involve my bowel, good thing I had it done. I knew something was going on. The surgery went well but on the night of 10/21 some capularies broke loose and I bled internally and a blood clot formed. I was in major pain and all the night nurse thought was that I wanted to be put back on the morphine.

Thank heavens the day nurse knew something was wrong when she arrived. They ordered a CT Scan and found the blood clot, then had to do an angiogram to see if it was an arterial bleed. They figured my blood thinned too fast after surgery so they had to give me Vitamin K shots to thicken it up again. I was given six units of blood and was put in ICU for a while; I needed more care than the regular nurses could give, although one nurse, Stephanie tried her hardest. She saved my life, I know it.

The bleeding finally stopped, and I went home on 10/26. I was still on the shots of Lovenox for blood thinner and coumadin. They couldn't get my blood to thin once they thickened it. I was going to the doc every other day for 6 weeks and it still wasn't thinning despite the increased coumadin. Finally though, it thinned but a little too much so the dose was lowered a little, but after two weeks, it's back to 1.1 which is square one. Once again, increasing the dosage.

I recovered fairly well, despite the blood thinning issues. There was a big issue with hormones. Since my blood was too thick, I couldn't be put on estrogen. I was a basket case for about three weeks on an emotional roller coaster and having severe hot flashes and night sweats. Although they can't put me on estrogen yet, they put me on Effexor for the hot flashes, and bonus - it calmed me down too.

Besides the no hormone issue, I feel better than I have in years physically. Th RA is stable and the Ulcerative Colitis is great - no sores! I can start eating fresh fruits and veggies on occasion. YAY. My acid reflux is good, but they had to stretch my esophagus again and clean out some scar tissue. I will stay on Nexium but I need to get a wedge to sleep on, to elevate my body to keep the acid from coming up when I sleep.

My RA bothers me from time to time, but no flares. Mornings and late nights are the worst times for pain but the pain pills and hot showers help keep it all under control.

Damn Blogger!

I had post all written, silly me didn't copy it first in case Blogger got hungry. Grrr. Here's the poop:

Surgery on 10/20 to remove my ovaries. Pre-op and another ultrasound next Friday. Slight/slim chance the cysts are shrinking, if so, no surgery... but we're not banking on it. We're hoping the surgery can be done lapro, but there may be complications with additional endromitriosis scarring, so they may have to do the lovely 10 inch incision again, as they did last year.

Protime results. Depsite being on 7.5 MG coumadin every day this week, it barly went up at all. 12.4/1.0 INR last week, and 13.7/1.1 INR today. The INR should be between 2 and 3. I'm on 15mg for 3 days, then back to the 7.5 and have it rechecked and go from there.

At least two things are going relatively well. Not much RA pain (outside of the normal) and the UC is doing fine.

Sicky

I was home sick for 3 days... I thought I was on the mend. Feeling like poo, and the antibiotic was helping the bronchitis and sinus infection but was causing other problems. I was so tired I could barely move. My cough is so much better, no longer "barky" and my sinuses are feeling clearer and the headache is pretty much gone.

I'm back to work today though! YAY. Oh wait... why again am I happy about that? ;-)

On the Mend

My bronchitis is much better, as well as my sinus infection. Rest, relaxation, and med have helped a lot.

RA is giving me fits today, but I think I need to move around some. UC is OK so far, but I'm sure trouble is brewing since I was really naughty and ate a salad last night.

I'm Going to Live

I have returned from the doctor. As I suspected, I was starting bronchitus so he gave me an inhaler for that. I also have a sinus infection so he gave me nasal spray and an antibiotic for that. He said to use the humidifier at night, and if the cough gets worse then to take some cough medicine (a specific kind that I can take, over the counter) and if even worse then to call. If my fever gets to 101, then call. I was at 99.0 so the tylenol is fine.

Despite the increase in my blood thinner, my levels were the same as 4 weeks ago. He told me to increase it more and come back next Friday to have it checked again. He thinks with all the meds I'm on, and all my body goes through that it is messing with the thinners.

He told me that I'm looking wonderful, especially with all I'm going through. We talked about mysugar levels, RA, UC, and the cysts that he'll get with my gyno next week after I see her. That's about it for now. I'll get some rest and some relaxing in this weekend.

Crap!

No wonder I was feeling flu-ish, I'm getting sick. It started with a cough this morning, and hit immediatly hurt, then it is feeling like a sinus infection, and I feel like poo and feeling worse by the minute. Shit. When this stuff hits me, it hits me fast because of my lowered immune system (what the Remicade does) and getting infections easy.

I see my internist in the morning, good thing.........

Flu-ish

I had my Remicade treatment yesterday and am feeling more flu-ish than I have for a while. I imagine it is from being tired. I don't have a fever so that is a good sign. Things are stable otherwise, leaving everything the same. IF I have to have surgery, he said I'd be fine not too miss any treatments since the surgery won't involve any joints.

Next up: appt on Friday with my internist for a general check up, and to find out what is going on with my protime levels.

Progress

I've had a little bit of progress. My gyno's office called Friday afternoon about the cysts, and I've scheduled and appointment to see her on Oct 7, to discuss what needs to be done. Finally.

The past week has been bad pain-wise. I stayed home Monday from work, and felt some better but the rest of the week was worse than normal. Which is pretty much the way it goes, I realized it was the week before my Remicade and things usually get a little worse then. I'll go in Tuesday for the treatment.

I'm also seeing my internist on Friday, Sept 30, to see if he can figure out why my blood isn't staying where it needs to be, it keeps getting thicker.

Bad Health Reporter

I've been so busy, and so much has been going on that I've neglected this health log again. I'm doing somewhat better, but my tummy isn't liking me, and I imagine it is stress related. I hope it will calm down and it isn't a flare.

I heard back from Dr W's office about all of my blood test results. All are good, so now Dr W. just needs to figure out what to do with they cysts and we'll go from there.

My Remicade treatment is in 10 days, and I will see my internist on Sept 30 for a general visit, and to see if he can figure out what's going on with my blood, why it keeps getting thicker despite the increases in coumadin doseage.

Little Set-back

This has been a hot week, and it finally caught up with me - as well as being exhausted. Yesterday was tough, my finger joints were tight and I could feel the inflammation starting. By late afternoon the joints were purple and one finger kept locking up. I rested a lot, and slept well last night. I took an extra boost of prednisone today and within 3 hours I felt a difference. Things are better this afternoon too.

I finally got my internist's office to return my call, the poor people were confused and thought they'd already called me on the tests but ignored the new tests. Duh. I need to increase the coumadin more - at the higher dosage 4 x a week instead of 3. I'll see how that goes. I've also scheduled an appt with him for a general follow up on Sept 30. Maybe he can figure out why the blood keeps thickening.

I will call my gyno's office on Monday, since I haven't heard back from them. They don't like us to call unless it has been 2 weeks. *sigh* At least I know the cancer was negative... now to deal with the cysts and find out about the other blood tests.

Negative

The ovarian cancer test came back negative, thank goodness! I don't know what I would have done if it was positive. The other tests came back too but I have no clue how to read them. I will call my gyno and make sure the results have been received.

My protime came back lower again, despite the increase in my coumadin. This is driving me nuts. I've got a call into my internist to see what he wants me to do.

The results from my RA doc, were fine. Liver is good and CBC is in good range. Remicade treatment went fine too. Just feeling the usual flu-ish and tired. It is getting better though.

SHIT

After 2 weeks of waiting, 3 phone calls to the hospital to get the damn ultrasound results to my Gyno. The nurse just called and said that since the cysts are still on the ovary, they need to do a CA125 test for ovarian cancer. Isn't life great?

I'm really trying not to freak out because my head is telling me it is just normal protocal to rule it out. I wish my heart would understand it. I'm stressed to the max with school, work, and not getting enough rest and now this. Lovely.

I have my Remicade treatment on Tuesday so the nurse will fax the order to my RA doc and they'll take the blood then while taking it for my usual tests. BUT I do know that the RA nurse will call me the next day with my results (she does of all tests) so at least I'll know quickly.

Nothing Much

to report. Still waiting on calls from docs about the cysts and about my coumadin dosage. Both will get phone calls tomorrow morning from a not-too-happy patient. Great docs but I think their staff doesn't do too good of a job carrying out orders. I think patients need to be proactive in their care anyway these days.

I was bad on Friday and had some fresh tomatoes and cucumbers for lunch. I paid the price but it was worth every bite. Sometimes I just have to eat those things. Like my body craves it with every fiber of my being.

Pain has been bad off/on. Yesterday my hips were killing me, but the pain pills helped. No signs of flares this week, so that's something!

Zero to B*tch in 2.9 Seconds

I was feeling OK, in some pain (enough for a pain pill) so I took one. Then a few minutes later, some rotten feelings came over me. Like I could scream and just want to run away. I started to shake too. Nothing happened to provoke it - just happenend. So I took a Xanax and its calming me down. I HATE feeling like this, I really do. I wish I knew what caused it though.

*UPDATE* ummm.... hello... its an anxiety attack!! Its been so long since I've had one that pops out of the blue that I forgot what it felt like. GAH!

My UC has been a rotten bugger the past few days, but seems to be doing better today. I hope it stays that way.

Cysts

I had my follow up ultrasound today on my left ovary. The cysts are still there, although one is slightly smaller (better than bigger!) but its apparent that they're not related to ovulation. I should hear from my doctor sometime next week (hopefully!). She's supposed to get the results by Wednesday.

I know that some cysts are shrunken by using birth control pills, but I can't take them due to the increase risk of blood clots. Which is one of the driving factors behind my partial hysterectomy last year. Hemorrhaging was a huge risk as well as pregnancy (which was unlikely with my history) could have killed me. I was actually on BC constantly for a year (after my blood clot in June 2003) to prevent the hemorrhaging to give me a year to think about the hyster. I was at peace with it, and knew it had to be done. I found out after the surgery that I was full of fibroids as well as endormetriosis (sp? too lazy to look it up!) which the surgeon removed.

So June of 2004, my ovaries were fine. The cysts have formed since then.

Now to wait and see what needs to be done. I'm upset about this - yet one more thing I have to deal with. I'm still trying to stay positive but its hard when I have so many things to deal with. Many others have things worse than I do but this still upsets me. Time for a pity pot day I think, then I should be fine and ready to face what I need to.

Schtuff

My left shoulder has flared. I took it easy yesterday but spent most of it at the computer putting things back together. Not a good idea... but not much choice. I slept for nearly 10 hrs last night, with the ice pack on (fell asleep), and actually didn't move all night. Shoulder is still hurting but flaring down. Pain pills are my friends today!

I finally heard back from the doc's office about my protime tests. I left a message yesterday morning saying, "You're messing with my life here" and that seemed to get some attention! The nurse called me almost immediately to tell my my doc was out of town again. So she was going to ask another doc in the office what to do then called me back yesterday afternoon. He said to take 5 mg coumadin for 4 days a week, then 7.5 mg for 3 days a week. PT was OK, but INR was still a little low. I need to call Dr. B again next week to see what he wants me to do.

Over all I'm feeling really tired and more than the usual exhuastion... but then again I haven't had much sleep for the last week (except last night).

UC has been fine, and blood sugar has bounced around some but hasn't gone below 60.

Results

After a few days of increased coumadin, my protime is finally risen - I don't think it is where it should be though but I'll have to wait to hear from my internist. 15.4 with INR of 1.3. Of course he's out of the office until Friday so I'll call first thing then to find out what he wants me to do. The pain in my legs has finally eased and its very mild so that's a good sign.

My Remicade treatment went fine yesterday. My RA doc checked my knees and hips and there is some swelling in my knee and from moving my knee checked my hip. Pulled just a little in the joint, but most of the pain was soft tissues (in my ass). He said that several patients have been really miserable with the heatwave but its definitely doing better.

My right foot feels like its flaring, or hurts pretty bad today. I'll baby it and put some ice on it when I get home from work.

UC is fine, and my blood sugar has been level - except for last night when I forgot to take a snack with me to my Remicade appt and ended up eating later than normal. It was fine when I went to bed and again this morning.

Fun, Fun

Its been a fun couple of days. Well, not really. My docs were out of the office on Friday so I ended up going to the ER that afternoon when the pain had spread to both legs and my ankles were a little swollen, despite the lasix. The ER doc ordered blood tests and my protime was even lower than it was on Wednesday despite the increase in coumadin. She also did a test to see if there was a possible clot, and it showed there may be so I had an ultrasound on both legs. Hurt like hell between my mid-thigh and my knees but I survived.

The right leg is clear, but there is still scar tissue in the left where there was before - probably some worse because of the thickening but hopefully will clear out again. I was so relieved there wasn't a blockage. She gave me a large dose of coumadin there, and then told me to keep it at the higher dose until Tuesday when I see my regular docs and have another protime taken. See where we're at.

My legs have really hurt, especially yesterday. Pain pills and keeping them elevated have helped a lot. Today, so far I haven't had to take a pain pill. YAY!

RA hasn't been too bad - but then again I've been on the pain pills!

Thick

I get my protime tests done each month when I get my Remicade treatment by my RA doc. The tests are to be sent to Dr. B my internist. I hadn't heard anything for about 3 months so I called on Tuesday to find out if everyting was OK. They haven't been getting my test results (so I'll raise some hell with the lab!). I had the results faxed to Dr. B and the tests showed my blood is a lot thicker than it should be. With the amount of coumadin I take, it shouldn't be that thick so just to double check, he had me go in Wed afternoon for a quick test in his office. It was slightly lower (thicker) than the other tests showed. Great. So he is having me increase my meds by 2.5 mg for 4 days then go back to my regular dose. Tuesday I'll have another protime to see how its doing.

Now, I don't know if I'm being paraoind or what, but the last 2 days my legs have ached just like my leg did when I had the DVT (blood clot down the length of my left leg) - not to that extreme but the same type of ache. My ankles are slightly swollen but not any more than they have been for the past 3 weeks (I thought from the heat). I'm on 80mg of lasix a day since I have swelling anyway. My right leg actually hurts worse. Last night I started to realize what it could be. I will call Dr. B today to see if he wants me to go in for an ultra sound or if the thinks its OK. I don't want to be paranoid but I also know blood clots are something not to be messed with.

Other than that - I had major RA pain with all the heat, but things have cooled off now and the pain isn't so bad. I went the past 2 days without a pain pill (only at night). YAY!

UC has been fine, but my blood sugar has been a bit irratic and I'm blaming the heat for that too. Seemed to be really bad when it was so hot.

Flares

I'm having some slight flares. Last night all of the sudden my right shoulder started bothering me, and before I knew it my wrist was too. The tendons were sticking out as they have in the past from the swelling. My elbow was next. I went to bed quickly and had ice packs on all spots and fell asleep, and woke up 4 hrs later and the ice packs had melted but things felt better so I didn't put more on. I woke up this morning with still some pain, and my right hip is doing the same thing. Then to top it off, I have the weird sore throat I get when I'm having flares. I'm sure its the heat causing it all, plus being upset Saturday night (upset is an understatement).

I was able to come to work though, and the pain pills have kept the pain in a tolerable level. I'll go to bed early again tonight and do the ice thing again. One good thing about the ice is that its keeping me cool! ;-)

UC has been fine, and my Blood sugar has been OK, I think the lowest its dropped was 66 in the past few days. Not sure why, I didn't forget to eat. Could be the heat too.