Truly, Central Oregon is horrible for dust. Given it's so dry (of course I say this as it is pouring down rain right now) dusting becomes more of a guideline than a rule. I dust and the next day it looks like I haven't run a rag over the area in about a month. With the upcoming move we've been pulling stuff out, going through it, and suffocating from the layers of crap we've stirred up. I swear, I haven't been this short of breath for a long time. Ryan's been hacking, the kids have been fighting runny noses, even the dogs have been sneezing. It is definitely not good to be breathing this junk in, not that we have a choice per se (it's been too cold to open the windows and doors, although I have here and there), but it's really bad for me. The weird weather hasn't helped either. Dampness and cold mixed with dry heat gets me hacking. I really am interested in hearing what the pulmonologist up in Portland has to say. While I don't relish the idea of being on an inhaler, I am ready to be able to breathe better one way or another.
I saw Dr. A's assistant last week and she was wonderful as well. I honestly can't say enough good things about Desert Orthopedics. Seriously, if you need an ortho call them. I have had nothing but wonderful experiences with them. They treat me like a human, they listen to me, they're honest with me, and they make you feel like you on part of the team--which you are (duh)--and that they're there to help you. Unfortunately I had some bad news. The first was that I could still keep having side effects from the SI joint injections for a few more weeks. While they symptoms have decreased, I am still having issues (more later). The second part was that as of now we've basically reached the end of the line treatment-wise for my problems. She did recommend trying an SI joint belt and put a call into Rebound for me. Now I just have to follow-through and get fitted for one. I meant to do it earlier this week, yet it flew by at amazing speed. Put it on my to-do-before-I-move list! I knew there weren't many treatment options for my SI joints. Dr. B at OHSU warned me of this from the get-go. Dr. A warned me as well. Being an optimist I had hoped to get relief somewhere along the line, but it isn't to be. :o( They did say they would continue my Percocet at least for a little while in case the new doctor doesn't want to prescribe it at first. That was like music to my ears. As much as I hate taking it, the cold damp weather has made it an absolute necessity. I have tried skipping a day here and there and it usually ends up making the pain worse the following day. I was told this is a "rebounding" issue--something like that--and not uncommon for folks w/chronic pain. Given my dosage is still low that's very good. Most folks build up a tolerance to painkillers and have to take more. I have no idea how long I'll be able to get away with taking 1/2 to 1 a day, but hopefully it will be for a long time. Or at least until something else I get on takes the pain away, or to a manageable level, and I can wean off the Percocet. I will keep wishing for that as long as there's that chance!
High blood pressure...it seems that although I am feeling better, I continue to have issues w/the elevated blood pressure. Anytime I do any type of exertion the left side of my head feels like it is going to split open. We are guessing it's from my blood pressure being wonky and hoping it goes away very soon. There is nothing worse than trying to do things quickly and feeling as if you are having a stroke. I guess if it keeps up I'll see a neuro up in Portland just to be safe. But really, I just don't want to know anymore. There's enough wrong with me to last a lifetime...and for about 12 people.
Medicine...off the Sulfasalazine again. Had breakthrough reflux, still am actually, so I stopped it. Hopefully the next rheumy I see can figure something else out that will work quickly and not cause problems. Or my GI doc can get my reflux issues sorted out. M.D. at the ortho's office gave me some samples of Zanaflex and a 'scrip for Trazadone to see if either one of those would help me sleep better. The Zanaflex made me sleepy but my brain kept running. I haven't filled the Trazadone yet, however I'm thinking of giving it a try. Would be nice to lay down and drift off to sleep instead of laying there for an hour or so running through the days events, or what needs to be done tomorrow, or what I forgot to do.
Showing posts with label Percocet. Show all posts
Showing posts with label Percocet. Show all posts
Thursday, October 18, 2007
Tuesday, September 18, 2007
My butt hurts
Okay, so not my actual butt, yet just right above my butt...on both sides no less...is quite sore. Doesn't help that the SI joints were already angry when we started the procedure. They just don't understand why I keep shoving needles into that area.
I arrived at the Bend Surgery Center at 9:30 for check-in, filled out the paperwork, paid the advanced payment (was not expecting that one...thanks for the heads up...not), and then did a little knitting while I waited to get called back. I didn't have to wait long and was soon taken back into another room were I had some vitals taken and opted not to have the sedative. I figured that if it didn't help with my pain during my bone biopsy there was no reason to think it would help with the pain today. Of course part of me liked the idea of being relaxed and not scared, yet I didn't want to deal with more pokes if I didn't have to. Again, IV's I hate but I can stand them when it's "worth" it, however I figured that since the procedure was only about 15-20 mins. I could deal with it. The nurse ended up being my kids' former pediatric nurse so that was kinda cool. We caught up a bit, she got me a warm blanket, and I took out my knitting again. About 3/4 of the way through square number one Dr. A came in to go over things with me. I love that man...he's just such a good doctor and truly cares about his patients. Anyways...by this time I was ready for a nap! I still had about 15-20 more mins. to kill until it was my turn and all I really wanted to do was climb up onto the gurney and go to bed. Instead I opted to finish the square and then I chilled.
The nurse called my name from the hall and she came in to get me as I gathered my things. I forewent the wheelchair, arrived at the fluoroscopy room, went pee, and then got myself positioned on the table ass in the air. The nice thing about not having an IV was that I got to wear my street clothes which consisted of sweatpants, a sweatshirt, and some faux Uggs. I was in comfort-mode for sure. The nurses had a good laugh at said sweatshirt as it's from Harry's Chocolate Shop in West Lafayette, IN and bares the motto, "Go Ugly Early." Dr. A came in, we chatted a bit, and then he marked the spots where my SI joints were after x-raying them (the black "v's" are tres chic, let me tell you!). Next step was the crappy lidocaine. He started off fairly superficially and then continued south until he was pretty damn close to the joints. Still, there is only so much you can numb and in the case of the pelvis, that ain't much. The needle was inserted, more xrays, more moving of the needle, inserting of dye, xrays, moving, etc.--VERY reminiscent of my bone biopsy. I cursed some, said "oww" quite a bit, breathed as if I were in labor, winced, and had involuntary muscle contractions both in my butt and my back. I did not, however, cry, scream, or feel like I was in out of control pain. Once he got the needle in position he injected the steroid. At first it's more of a pressure vs. pain thing. That quickly changes and it becomes all about the pain. Like I said, I had flashbacks of my bone biopsy. Same type of pain and pressure yet nothing can be done to relieve either. The worst part was knowing that despite being finished with the right one, the left still had to be injected. Soon enough they were all done. Probably took about 15 mins. or so, but damn it wasn't fun. Dr. A was awesome though--he was quite concerned and apologized for causing me pain. I told him it would all be worth it if it works! He said he felt really good about the injections in that he was sure they both flowed fully into the SI joints. The one nurse/tech handling the fluoroscope said you could see just how perfectly the cortisone had been placed, so that was reassuring! The nurses said I was one tough cookie and were very proud of me. Go me! :o)
Once I slid ever so carefully off of the table I was wheeled into the recovery area where a nurse gave me my discharge instructions and some water. She also went and fetched Ryan who had been there the entire time but didn't tell anyone. Dork. I was told that I would need a driver no matter what, but then was told that since I wasn't given sedation that I could drive myself home if I felt up to it. So basically Ryan drove in from Redmond for no reason. :o/ He still followed me home to make sure I didn't kill anyone or myself. I took a half a percocet, ate something, and rested. As the day has gone on I've continued to be quite sore which is supposed to be normal. We had Ian's Open House tonight and although I went, it was very tough. I took another half of a percocet before it started and then another half mid-way through. All the standing on sitting on super hard chairs was just too much. In the end we left during "4th" period as I just couldn't do it any longer. I would've toughed it out but....
...Ryan got a job offer today.
...And I am this () close to selling the biz to a gal who I think will rock it out!!!
After the shit-ass weekend I had I had literally prayed for some good karma. And given I'm not a religious person, that's saying a lot. But someone heard me...and finally the karma shifted. I just hope that it all stays good and works out. I will miss a lot of people in Bend, but we're all ready for a change and it's time to move on. If the cortisone injections work, it will be the biggest cherry on top!
I arrived at the Bend Surgery Center at 9:30 for check-in, filled out the paperwork, paid the advanced payment (was not expecting that one...thanks for the heads up...not), and then did a little knitting while I waited to get called back. I didn't have to wait long and was soon taken back into another room were I had some vitals taken and opted not to have the sedative. I figured that if it didn't help with my pain during my bone biopsy there was no reason to think it would help with the pain today. Of course part of me liked the idea of being relaxed and not scared, yet I didn't want to deal with more pokes if I didn't have to. Again, IV's I hate but I can stand them when it's "worth" it, however I figured that since the procedure was only about 15-20 mins. I could deal with it. The nurse ended up being my kids' former pediatric nurse so that was kinda cool. We caught up a bit, she got me a warm blanket, and I took out my knitting again. About 3/4 of the way through square number one Dr. A came in to go over things with me. I love that man...he's just such a good doctor and truly cares about his patients. Anyways...by this time I was ready for a nap! I still had about 15-20 more mins. to kill until it was my turn and all I really wanted to do was climb up onto the gurney and go to bed. Instead I opted to finish the square and then I chilled.
The nurse called my name from the hall and she came in to get me as I gathered my things. I forewent the wheelchair, arrived at the fluoroscopy room, went pee, and then got myself positioned on the table ass in the air. The nice thing about not having an IV was that I got to wear my street clothes which consisted of sweatpants, a sweatshirt, and some faux Uggs. I was in comfort-mode for sure. The nurses had a good laugh at said sweatshirt as it's from Harry's Chocolate Shop in West Lafayette, IN and bares the motto, "Go Ugly Early." Dr. A came in, we chatted a bit, and then he marked the spots where my SI joints were after x-raying them (the black "v's" are tres chic, let me tell you!). Next step was the crappy lidocaine. He started off fairly superficially and then continued south until he was pretty damn close to the joints. Still, there is only so much you can numb and in the case of the pelvis, that ain't much. The needle was inserted, more xrays, more moving of the needle, inserting of dye, xrays, moving, etc.--VERY reminiscent of my bone biopsy. I cursed some, said "oww" quite a bit, breathed as if I were in labor, winced, and had involuntary muscle contractions both in my butt and my back. I did not, however, cry, scream, or feel like I was in out of control pain. Once he got the needle in position he injected the steroid. At first it's more of a pressure vs. pain thing. That quickly changes and it becomes all about the pain. Like I said, I had flashbacks of my bone biopsy. Same type of pain and pressure yet nothing can be done to relieve either. The worst part was knowing that despite being finished with the right one, the left still had to be injected. Soon enough they were all done. Probably took about 15 mins. or so, but damn it wasn't fun. Dr. A was awesome though--he was quite concerned and apologized for causing me pain. I told him it would all be worth it if it works! He said he felt really good about the injections in that he was sure they both flowed fully into the SI joints. The one nurse/tech handling the fluoroscope said you could see just how perfectly the cortisone had been placed, so that was reassuring! The nurses said I was one tough cookie and were very proud of me. Go me! :o)
Once I slid ever so carefully off of the table I was wheeled into the recovery area where a nurse gave me my discharge instructions and some water. She also went and fetched Ryan who had been there the entire time but didn't tell anyone. Dork. I was told that I would need a driver no matter what, but then was told that since I wasn't given sedation that I could drive myself home if I felt up to it. So basically Ryan drove in from Redmond for no reason. :o/ He still followed me home to make sure I didn't kill anyone or myself. I took a half a percocet, ate something, and rested. As the day has gone on I've continued to be quite sore which is supposed to be normal. We had Ian's Open House tonight and although I went, it was very tough. I took another half of a percocet before it started and then another half mid-way through. All the standing on sitting on super hard chairs was just too much. In the end we left during "4th" period as I just couldn't do it any longer. I would've toughed it out but....
...Ryan got a job offer today.
...And I am this () close to selling the biz to a gal who I think will rock it out!!!
After the shit-ass weekend I had I had literally prayed for some good karma. And given I'm not a religious person, that's saying a lot. But someone heard me...and finally the karma shifted. I just hope that it all stays good and works out. I will miss a lot of people in Bend, but we're all ready for a change and it's time to move on. If the cortisone injections work, it will be the biggest cherry on top!
Sunday, September 16, 2007
Back on the Sulfa...sort of
I actually called Dr. B (go me!) and told them that I was in quite a bit of pain, so they told me to get back on the Sulfasalazine (henceforth known as Zine), only this time I was to start taking two a day and then work up to the higher dosage. I went ahead and took a pill that evening and started doing the twice a day deal until Friday when I got that nasty headache on the right side of my head again. I wasn't sure if it was the Zine or if this is some other craptastical thing I have to look forward to from here on out. I can kick it w/one Advil...the problem is that I am scheduled for the SI joint injections on Tues. the 18th and am not supposed to take any ibuprofen or aspirin from Thurs. on. Of course after being in horrendous headache hell for over 5 hrs., I broke down and took an Advil. However, w/not knowing what's causing these I decided to stop the Zine until after the injections when I am allowed to take ibuprofen again. The other sucky think about Zine is that it takes anywhere from 1-3 months before any relief is felt. That's a long ass time to wait when you're in pain but it's damn near impossible when all you want to do is lay down and die.
And ladies and gentlemen, that's how I felt today. This weekend we had 4 events and a helluva lotta stress. We have hopefully found a buyer for our business but she may end up changing her mind and that just compounds all the crap I'm under. I know I overdid it these past couple of days, yet I have a hard time slowing down. Today I thought I would be able to relax and recoup but thanks to a caretaker pulling down the ceiling we had hung for a wedding on Sat. and left up for the wedding on Sun., that was not to be. Instead my dad and I had to beat feet down there, check the stuff, and re-hang it. So once again my body was pushed despite my dad being the awesome dad that he is and hanging the ceiling. I always help, though, so it was up and down the ladder, handing stuff to him, etc. and so forth. Next we hit Broken Top to pick up some rental items, then I headed to Fred Meyer's for some grub as I hadn't eaten at all, and by the time I got home I was in trouble. I took half a Percocet and tried to chill. Unfortunately it didn't work. No matter what position I laid in my bones were screaming at me. I don't know if it was the fatigue, the pain, the culmination of the stress from this weekend, or what but I gave in and cried. Then I took a whole Percocet and after awhile the pain had gone back down to the typical 4 or so.
I have decided that if after having the injections I am still having this much bone pain (which I probably will since the two are essentially unrelated), that I'll be calling Dr. B back and doing my best to get it through his head that when the pain is this bad I can't wait months for relief. For now I'm just hoping that the SI injections are fairly painless and that they work...and that the aching bones subsides soon.
And ladies and gentlemen, that's how I felt today. This weekend we had 4 events and a helluva lotta stress. We have hopefully found a buyer for our business but she may end up changing her mind and that just compounds all the crap I'm under. I know I overdid it these past couple of days, yet I have a hard time slowing down. Today I thought I would be able to relax and recoup but thanks to a caretaker pulling down the ceiling we had hung for a wedding on Sat. and left up for the wedding on Sun., that was not to be. Instead my dad and I had to beat feet down there, check the stuff, and re-hang it. So once again my body was pushed despite my dad being the awesome dad that he is and hanging the ceiling. I always help, though, so it was up and down the ladder, handing stuff to him, etc. and so forth. Next we hit Broken Top to pick up some rental items, then I headed to Fred Meyer's for some grub as I hadn't eaten at all, and by the time I got home I was in trouble. I took half a Percocet and tried to chill. Unfortunately it didn't work. No matter what position I laid in my bones were screaming at me. I don't know if it was the fatigue, the pain, the culmination of the stress from this weekend, or what but I gave in and cried. Then I took a whole Percocet and after awhile the pain had gone back down to the typical 4 or so.
I have decided that if after having the injections I am still having this much bone pain (which I probably will since the two are essentially unrelated), that I'll be calling Dr. B back and doing my best to get it through his head that when the pain is this bad I can't wait months for relief. For now I'm just hoping that the SI injections are fairly painless and that they work...and that the aching bones subsides soon.
Monday, September 10, 2007
Ouch
I had been going along doing alright, still needing the Percocet, but typically being able to keep it at a half to a whole a day. Then this weekend I hit the wall again. It felt like I was coming down with the flu to the point that I was sure I was getting sick. Despite having been through this more than once I always fall back to the "I'm coming down w/something" thoughts because truly, no one should feel this bad without being able to look forward to getting better. In all fairness we've had a run of the sniffles/congestion as the weather goes back and forth between fall and HELL. I love Bend but I sometimes get tired of only 2 wks. of fall before winter sets in. Although I do have to wonder if the changing weather isn't part of why I've been feeling so crappy. In any event every joint has been acting up. My bones ache even. I was rolling along on my knitting but had to stop because my hands, wrists, fingers, and arms hurt just hanging off of my body, let alone actually doing something. It seems like it's been awhile since my bones hurt and I was in this much pain all over...maybe not. I'd have to look back and read. Tonight I made Ryan promise to "make" me call Dr. B tomorrow and tell them that I am not okay. I need the prodding, for whatever reason, or else I won't do it. And I need to.
With the pain came the extreme exhaustion. I have noticed that I've been toeing that line for awhile now and even though I'm always tired I do know there are differing levels of fatigue for me. For awhile I attributed it to PMS. Then when that should've cleared up I wasn't quite out of that fog/fatigue mode. This weekend was fairly stressful for me which may also have contributed to the big flare. On Sat. morning we went out for Ian's early breakfast (typically I take the kids out for breakfast on their birthdays, but Ian decided that he had no desire to get up at 5:45 a.m. to eat out and get to school on time--I love that kid) and it was all I could do not to fall asleep during our meal. I did end up napping a bit the rest of the day but we had a wedding to decorate so I didn't get to truly rest. Now I feel as if I haven't caught up and could sleep for days.
My eyes have also been quite dry/achy and the left is a beautiful shade of crimson. Nothing new there. :o)
I also need to call Dr. A about the SI joint injections as his office hasn't called me to set it up. Last night I had a nightmare about it and now I'm really dreading it. And yet looking forward to the hope that it will work.
I will say though, that watching Ryan play Oblivion is good for the soul as he makes me laugh. A lot.
With the pain came the extreme exhaustion. I have noticed that I've been toeing that line for awhile now and even though I'm always tired I do know there are differing levels of fatigue for me. For awhile I attributed it to PMS. Then when that should've cleared up I wasn't quite out of that fog/fatigue mode. This weekend was fairly stressful for me which may also have contributed to the big flare. On Sat. morning we went out for Ian's early breakfast (typically I take the kids out for breakfast on their birthdays, but Ian decided that he had no desire to get up at 5:45 a.m. to eat out and get to school on time--I love that kid) and it was all I could do not to fall asleep during our meal. I did end up napping a bit the rest of the day but we had a wedding to decorate so I didn't get to truly rest. Now I feel as if I haven't caught up and could sleep for days.
My eyes have also been quite dry/achy and the left is a beautiful shade of crimson. Nothing new there. :o)
I also need to call Dr. A about the SI joint injections as his office hasn't called me to set it up. Last night I had a nightmare about it and now I'm really dreading it. And yet looking forward to the hope that it will work.
I will say though, that watching Ryan play Oblivion is good for the soul as he makes me laugh. A lot.
Wednesday, August 29, 2007
Results are in
I was finally able to get my hands on the results of my liver biopsy and looks like as of right now there are no Alpha-1 granules in my liver. This is good, of course I have no idea if there could still be granules elsewhere and just not in the biopsy site, or if they could still appear later. Hopefully these questions will be answered when I see Dr. Z in Oct. I did cancel the appt. with that bitch of an NP and am sure they won't call to see why or tell me my results. There were also no signs of fibrosis or cirrhosis--more good news. Not so great news is that I have a mild fatty liver, the left lobe of the liver is enlarged, and the right lobe is "particularly prominent." The problem is that usually fatty liver is associated with obesity/being overweight, diabetes, and/or alcoholism--a.k.a. things you can change and get better. I am nowhere near being overweight, I don't have diabetes, and I don't drink with the exception of a beer or glass of wine ever so often (even more seldom these days). My diet is good, I eat lots of veggies and fruits because I love them, chicken, meat, fish are typical, I avoid bad stuff as much as possible though I do indulge here and there with a piece or two of chocolate (sometimes every night...ack! Ryan bought me 2 lbs. of Leonidas damnit!), and I'd love to lose 10 lbs. but overall my nutrition intake is fine. And believe me, if I thought it needed tweaking I would both admit it and change it. So what's causing the fatty liver? That's the million dollar question right now. The second million dollar question is, "Does it matter?" I don't know if that's a problem. I'm guessing that I'll have to be monitored to ensure that this doesn't advance to fibrosis and then cirrhosis as it very easily can. One of the gals on my Alpha-1 list started off with a fatty liver (with no apparent reason for it, like me), then it slowly progressed until she ended up having a transplant. Unfortunately she hadn't had a liver biopsy until the very end so no way to know if she had the Alpha-1 granules when she was at the fatty liver stage or not. In the end, the important part is that at last check the blood levels were normalizing and we just have to hope they stay that way. I am still bloated and having pain from the enlarged liver but such is life. I can live with it so long as things aren't bad.
I saw Dr. A (ortho) on Mon. for another follow-up appt. Wouldn't you know it, my SI joints have been behaving themselves, only causing the dull ache like usual, until this past weekend when the left side started giving me shooting pains in the area when I bent over. Then I guess I started favoring that side so the right one got out of whack and it too decided to bitch. So by Mon. I was ready to try the cortisone injections despite being scared of something going wrong like the liver biopsy and being in a ton of pain. Plus, after that bone biopsy I'm a little gun shy with sticking needles into that area. Nevertheless, I'm game for doing the injections and possibly having pain relief somewhere. What I didn't know was that the procedure is done with xray guidance and would have to be scheduled. My kids had come with me on Mon. as I had no one to watch them, so they were relieved to learn they wouldn't have to be anywhere near me when they shoved needles into my butt. :o) I would've made them leave the room, of course, however the mere thought gave them the heebie jeebies. Dr. A also refilled the Percocet so if the cortisone doesn't work I'll at least have something. I'm still keeping the dosage at a half to a whole a day unless the pain is really unbearable and then sometimes I hit two a day, but that's also still rare. Thankfully.
Today I noticed I was having some breathing difficulties which may have been due to the hot weather. It had been cool for awhile (I loved it...was almost like Fall!) and then the sun came back and brought the heat with it. Just another reminder that I need to call Dr. A.B. up at OHSU for a pulmonology work-up. I'm way too good at procrastination. Well that and we're so slammed with weddings from here on out that I keep telling myself it would be too difficult to make the trek up to Portland. Excuses, excuses.
Aciphex is continuing to do it's job at keeping the reflux at bay. I've been having horrible nausea and even a slight amount of breakthrough heartburn which I am attributing to my PMS. I had the worst bout of nausea the other day before we had to go decorate that I thought for sure I'd be spending most of the time hogging a stall at the venue. At that point I was sure I was getting the flu or something. I couldn't even drink water without wanting to hurl. Time passed and slowly it went away. Then my boobs started hurting and my face broke out. Plus I hit a wall fatigue-wise again and started sleeping roughly 10 hrs. and feeling as if it had only been 4. And maybe I got a little moody too. Maybe. At least it wasn't the flu.
I'm writing this next portion down to remind myself to call and bitch at Dr. B's office and find out what I'm supposed to do medicine-wise as no one has returned my calls. I'd really like to get the cortisone and then assuming it works, start weaning off of the Percocet. However, I have to get the joint/muscle pain under control first and I can't until they can get me something that works.
That's it for now, I suppose. Taking it day by day and enjoying the good ones.
I saw Dr. A (ortho) on Mon. for another follow-up appt. Wouldn't you know it, my SI joints have been behaving themselves, only causing the dull ache like usual, until this past weekend when the left side started giving me shooting pains in the area when I bent over. Then I guess I started favoring that side so the right one got out of whack and it too decided to bitch. So by Mon. I was ready to try the cortisone injections despite being scared of something going wrong like the liver biopsy and being in a ton of pain. Plus, after that bone biopsy I'm a little gun shy with sticking needles into that area. Nevertheless, I'm game for doing the injections and possibly having pain relief somewhere. What I didn't know was that the procedure is done with xray guidance and would have to be scheduled. My kids had come with me on Mon. as I had no one to watch them, so they were relieved to learn they wouldn't have to be anywhere near me when they shoved needles into my butt. :o) I would've made them leave the room, of course, however the mere thought gave them the heebie jeebies. Dr. A also refilled the Percocet so if the cortisone doesn't work I'll at least have something. I'm still keeping the dosage at a half to a whole a day unless the pain is really unbearable and then sometimes I hit two a day, but that's also still rare. Thankfully.
Today I noticed I was having some breathing difficulties which may have been due to the hot weather. It had been cool for awhile (I loved it...was almost like Fall!) and then the sun came back and brought the heat with it. Just another reminder that I need to call Dr. A.B. up at OHSU for a pulmonology work-up. I'm way too good at procrastination. Well that and we're so slammed with weddings from here on out that I keep telling myself it would be too difficult to make the trek up to Portland. Excuses, excuses.
Aciphex is continuing to do it's job at keeping the reflux at bay. I've been having horrible nausea and even a slight amount of breakthrough heartburn which I am attributing to my PMS. I had the worst bout of nausea the other day before we had to go decorate that I thought for sure I'd be spending most of the time hogging a stall at the venue. At that point I was sure I was getting the flu or something. I couldn't even drink water without wanting to hurl. Time passed and slowly it went away. Then my boobs started hurting and my face broke out. Plus I hit a wall fatigue-wise again and started sleeping roughly 10 hrs. and feeling as if it had only been 4. And maybe I got a little moody too. Maybe. At least it wasn't the flu.
I'm writing this next portion down to remind myself to call and bitch at Dr. B's office and find out what I'm supposed to do medicine-wise as no one has returned my calls. I'd really like to get the cortisone and then assuming it works, start weaning off of the Percocet. However, I have to get the joint/muscle pain under control first and I can't until they can get me something that works.
That's it for now, I suppose. Taking it day by day and enjoying the good ones.
Sunday, August 12, 2007
Breathing easier
Sort of anyways. The pain has gotten so much better. Last night I was able to take away the small pillow I had to tuck underneath my liver/side and actually sleep. I can't wait to get rid of the second pillow under "my" pillow. Not a big pillow fan. I also drove some today and only had a slight twinge when I turned around to look behind me as I was backing out of a parking space. I've had to continue taking the Percocet as my legs have been killing me again. Writing a mental not to myself to actually call my rheumy tomorrow and let them know that I stopped the Sulfasalazine and haven't been able to start it back up again. Let's see if I remember.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
Tuesday, July 31, 2007
For the love of...
I put off upping the Sulfasalazine for a couple of days and ended up with a sore throat. This was listed as one of the "stop taking immediately" side effects, so I did. Then we went out of town and I didn't have a chance to ask my doctor about it. Why haven't I called him yet despite coming back on Sunday? Because that would make sense and we all know how I can't have anything make sense. I guess part of it is because I was busy catching up on work and the other part was that I figure that since I haven't keeled over that it's probably nothing. Still, I will be calling there tomorrow as I would like to go back on it if possible. I wouldn't be surprised if the sore throat is from reflux. I did the 14-day regimen of Prilosec and it worked well. Coincidentally (or not) after finishing the recommended amount, a few days later (about the same time I was due to up my dosage of the Sulfasalazine) I got the sore throat. So maybe it is reflux and not med side effects. Of course the crap part of all of this is that if it is reflux then that means I am screwed in that dept. thanks to the NSAID's and Pred. Just one more pill to take for a long time I guess.
I also rescheduled my liver biopsy to Aug. 9th at 11 a.m. Given that we have 3 events this weekend I figured it would be better to not be recovering from a hole being punched in my liver. Wise decision on my part as I have been swamped and stressed.
Leg-wise I have still been very achy and grudgingly taking the Percocet. I would really, really, really like to wean off of these as I do worry about becoming addicted. Regardless of whether or not I need them now doesn't matter. I don't like it and they freak me the hell out.
Hannibal Oliver (Hannibal from Dr. Lecter since he liked liver so much, Oliver from a gal who named "it" on the internets for me) is growing nicely. Not too fast, yet enough to make me shake my head and groan when I look down. When DH and I were up in Portland this past weekend we passed by a maternity store and I was THIS close to going in. The only thing that stopped me was knowing full well that anything with the word "maternity" on it automatically price jumps by about 100%. Boooooooo. For now I'll stick with my new flowy-bottom tops that I adore and curse at my snug (re: normal) t-shirts. I tell ya, I used to think I had a belly that needed toning and would lament that I looked pregnant when I wore sweatpants. Excuse me while I go smack myself upside the head. Plus, nothing is worse than seeing your belly enlarge and your boobs stay the same size. At least if they got bigger I'd be proportionate but NO...can't have that now can we? Eh, fiddlesticks.
And yes, even though I know you don't have to ask, I'm still exhausted. That part hasn't changed.
I also rescheduled my liver biopsy to Aug. 9th at 11 a.m. Given that we have 3 events this weekend I figured it would be better to not be recovering from a hole being punched in my liver. Wise decision on my part as I have been swamped and stressed.
Leg-wise I have still been very achy and grudgingly taking the Percocet. I would really, really, really like to wean off of these as I do worry about becoming addicted. Regardless of whether or not I need them now doesn't matter. I don't like it and they freak me the hell out.
Hannibal Oliver (Hannibal from Dr. Lecter since he liked liver so much, Oliver from a gal who named "it" on the internets for me) is growing nicely. Not too fast, yet enough to make me shake my head and groan when I look down. When DH and I were up in Portland this past weekend we passed by a maternity store and I was THIS close to going in. The only thing that stopped me was knowing full well that anything with the word "maternity" on it automatically price jumps by about 100%. Boooooooo. For now I'll stick with my new flowy-bottom tops that I adore and curse at my snug (re: normal) t-shirts. I tell ya, I used to think I had a belly that needed toning and would lament that I looked pregnant when I wore sweatpants. Excuse me while I go smack myself upside the head. Plus, nothing is worse than seeing your belly enlarge and your boobs stay the same size. At least if they got bigger I'd be proportionate but NO...can't have that now can we? Eh, fiddlesticks.
And yes, even though I know you don't have to ask, I'm still exhausted. That part hasn't changed.
Monday, July 23, 2007
Still kickin'
Today will be the first day I up the Sulfasalazine from one a day to two a day. I'm hoping I see better results soon as I'm about half to 3/4 of the way through my Percocet and I don't know if my ortho will give me anymore or not. And really, I'd LOVE to be off of them even if it is just one a day. Course as I say this I know that the Sulfasalazine isn't great for my liver either. Maybe worse? Not sure. In a perfect world I wouldn't need any drugs...but this isn't a perfect world.
Physically I feel the same. Exhausted, nauseous at times, bloated, and my legs still ache insanely bad. Here's my enlarged belly:
Maternity clothes time anyone?? You can see how that far side (what looks like my left but is actually my right as this was taken in a mirror) sticks out more than the other. Hello liver!!
I can't say I'm looking forward to next Monday. I already read Harry Potter and the Deathly Hallows. Finished it in two days. Didn't want to but couldn't put it down. I'll have to find something else to read/watch for that day. Ah well...
My left eye flared up yesterday. Looked very ugly and angry. It's been awhile since the last flare so I was kind of surprised to see it red again.
I also haven't set up an appt. with a pulmonologist yet but I'm working on it. Sometimes I think my breathing issues when I'm just laying around (shortness of breath for instance) comes from my liver being enlarged. Other times I wonder if it might be due to Alpha-1 Lung disease. We'll see.
Tuesday, July 17, 2007
I'm not dead yet
Tentatively I started the Sulfasalazine yesterday and tried not to worry myself into a rash--because then how the hell would I know if it was the worry or the drugs?!!! ;o) I had taken half a Percocet in the morning and although I needed it about the same time I took the Sulfasalazine I held off to ensure that if there were any side effects I would know where it was coming from. I actually felt a tad better that night. Not nearly as achy. It is waaaaaay too early for the Sulfasalazine (man I hate typing that out) to have done anything, yet there it was. So who knows. Today I took it in the morning. I did get some mid-morning nausea that was no fun but tolerable. Thankfully the nausea wore off fairly quickly--about 2 hrs. and (knock on wood) I haven't had any rashes, itches, vomiting blood, or death. Sweet! If for some reason I suddenly drop off then chalk it up to the drugs finally killing me.
The phone rang this morning around 8:45 and was one of the gals from Dr. H's office. My liver biopsy is scheduled for July 30th at 9:00 a.m. I have to be there at 8 for some pre-biopsy bloodwork, then they'll do the "nasty," make me lay on my side for awhile (or so I've read), and I've been instructed to stay in bed the rest of the day to minimize the risk of bleeding. Thankfully I should time it about right for me to begin reading the final Harry Potter book. Yes, I realize the book comes out well before I get jabbed in the liver, yet I want to hold off as I re-read book 6 first. Or I may say "screw it" and just dive right in to Deathly Hallows. I figure I'll get incredibly bored staying in bed but I also figure I'll be sleeping a lot that day too. So maybe I shouldn't wait on starting book 7 on that day. hmmmm....
They also moved my appt. to Aug. 13th. I have to see that idiot NP again and I swear, if she so much as says anything remotely assinine again I will walk out. Apparently Dr. H will be in the clinic that day as well although it's unclear as to whether or not I'll actually see him. I guess he and the NP are collaborating and will be going over my test results together. Man do I hope I see him personally. Of course I plan to pick up my biopsy results before the appt. so I can go over them, research, and know what questions to ask. Plus I'm an impatient little shit. Course I say that now and watch...the stupid medical records red tape at BMC will put a halt to that. Fingers crossed that since it's being done at the hospital that I can access it via my medical records there. They are a billion times easier to work with down there!
I took some pics of my "baby" tonight. "Baby" meaning my huge belly. I could easily pass for being about 4 mos. pregnant. Maybe even 5. I have seriously thought about getting some maternity clothes just so I can be comfortable. It's not easy, nor fun, squeezing your big belly into jeans that fit everywhere else BUT that area. And don't even get me started on my shirts. The ones that used to be roomy and let me breathe now look like they were shrunk into oblivion. I thought getting one of those empire-waisted type tops would be great for me. They would have been except that I have to get a medium so my boobs fill the top out and normally that would leave the bottom half somewhat loose for me. Like how it's supposed to be. Nowadays, however, the boobs fit and the belly stretches the fabric taught. Not a good look. Unless you're pregnant. And I'm definitely not pregnant.
Yeah for ascites...not.
Where's the shirt that says, "I'm not pregnant. I just have a pissed off liver." I need one of those.
The phone rang this morning around 8:45 and was one of the gals from Dr. H's office. My liver biopsy is scheduled for July 30th at 9:00 a.m. I have to be there at 8 for some pre-biopsy bloodwork, then they'll do the "nasty," make me lay on my side for awhile (or so I've read), and I've been instructed to stay in bed the rest of the day to minimize the risk of bleeding. Thankfully I should time it about right for me to begin reading the final Harry Potter book. Yes, I realize the book comes out well before I get jabbed in the liver, yet I want to hold off as I re-read book 6 first. Or I may say "screw it" and just dive right in to Deathly Hallows. I figure I'll get incredibly bored staying in bed but I also figure I'll be sleeping a lot that day too. So maybe I shouldn't wait on starting book 7 on that day. hmmmm....
They also moved my appt. to Aug. 13th. I have to see that idiot NP again and I swear, if she so much as says anything remotely assinine again I will walk out. Apparently Dr. H will be in the clinic that day as well although it's unclear as to whether or not I'll actually see him. I guess he and the NP are collaborating and will be going over my test results together. Man do I hope I see him personally. Of course I plan to pick up my biopsy results before the appt. so I can go over them, research, and know what questions to ask. Plus I'm an impatient little shit. Course I say that now and watch...the stupid medical records red tape at BMC will put a halt to that. Fingers crossed that since it's being done at the hospital that I can access it via my medical records there. They are a billion times easier to work with down there!
I took some pics of my "baby" tonight. "Baby" meaning my huge belly. I could easily pass for being about 4 mos. pregnant. Maybe even 5. I have seriously thought about getting some maternity clothes just so I can be comfortable. It's not easy, nor fun, squeezing your big belly into jeans that fit everywhere else BUT that area. And don't even get me started on my shirts. The ones that used to be roomy and let me breathe now look like they were shrunk into oblivion. I thought getting one of those empire-waisted type tops would be great for me. They would have been except that I have to get a medium so my boobs fill the top out and normally that would leave the bottom half somewhat loose for me. Like how it's supposed to be. Nowadays, however, the boobs fit and the belly stretches the fabric taught. Not a good look. Unless you're pregnant. And I'm definitely not pregnant.
Yeah for ascites...not.
Where's the shirt that says, "I'm not pregnant. I just have a pissed off liver." I need one of those.
Tuesday, June 19, 2007
Recently
I've been exhausted and swamped with work lately so I haven't had time to blog. I saw Dr. B last week and he seems to be quite worried about my liver. With the enzymes being elevated and me having lots of pain in my right upper quadrant, he figured it was time to do a CT and see if anything is going on. That will take place on Thursday. Should be loads of fun.
Still no name on what I have. Dr. B says that he has a few patients that make him scratch his head. Apparently I am one of them. I asked about the Alpha-1 test but he said he didn't think it was clinically significant. This was before he went into worry mode over my liver or else I would've brought it up. I guess I should have brought it up anyways but I just don't like arguing. Especially with a doctor that seems to think I don't know much. I did, however, give him my list of symptoms, test results, and what have you. He seemed both impressed and thankful for it. Who knows if he'll actually read it, if it will go in my chart, or if it will end up in the trash.
Dr. B mentioned a new med for me yet didn't prescribe it. My dad seems to think it's because Dr. B was probably waiting on the results of my bloodwork (yep, had to have more blood drawn) before he decided what dosage to give me. I called today and left a message as I have half a Percocet left. I had hoped they would prescribe me something--either the new med, the Percocet, or both. This week was/is a hectic one for me work-wise and my legs scream not too long after I wake up. I hate to take anything, yet I hate to feel like I do too. So I'm sucking it up and asking for more.
As mentioned earlier I had another trip to the lab. This time Dr. B wants to rule out Wilson's Disease and an iron overload--neither of which he (or I) think I have. Nevertheless, he's being thorough for sure. I saw he was also checking some other routine stuff. We'll see if anything comes back elevated. I purposefully did not take any pain meds in the morning so that I could both tell Dr. B exactly where the pain was and at what level, plus I wanted a "clean" system for blood draws. No idea if it helped. I figure I'll pick up my results tomorrow. I have to head down to BMC to get some stuff to drink for the CT so a quick jaunt to the hospital is in the cards.
Dr. B also gave me a fast once over. Said many tender spots are also fibro spots but didn't say I have it. Who knows. It seems the Prednisone did help. After being off of it for awhile now I can honestly say that while it definitely did not take away all of my pain and I did have to take the Percocet too, there was a slight improvement. Not enough to endure the massive GERD issues, though. My pinky benefited from the Pred and now it's back to yelling at me. Grumpy little thing.
Still no name on what I have. Dr. B says that he has a few patients that make him scratch his head. Apparently I am one of them. I asked about the Alpha-1 test but he said he didn't think it was clinically significant. This was before he went into worry mode over my liver or else I would've brought it up. I guess I should have brought it up anyways but I just don't like arguing. Especially with a doctor that seems to think I don't know much. I did, however, give him my list of symptoms, test results, and what have you. He seemed both impressed and thankful for it. Who knows if he'll actually read it, if it will go in my chart, or if it will end up in the trash.
Dr. B mentioned a new med for me yet didn't prescribe it. My dad seems to think it's because Dr. B was probably waiting on the results of my bloodwork (yep, had to have more blood drawn) before he decided what dosage to give me. I called today and left a message as I have half a Percocet left. I had hoped they would prescribe me something--either the new med, the Percocet, or both. This week was/is a hectic one for me work-wise and my legs scream not too long after I wake up. I hate to take anything, yet I hate to feel like I do too. So I'm sucking it up and asking for more.
As mentioned earlier I had another trip to the lab. This time Dr. B wants to rule out Wilson's Disease and an iron overload--neither of which he (or I) think I have. Nevertheless, he's being thorough for sure. I saw he was also checking some other routine stuff. We'll see if anything comes back elevated. I purposefully did not take any pain meds in the morning so that I could both tell Dr. B exactly where the pain was and at what level, plus I wanted a "clean" system for blood draws. No idea if it helped. I figure I'll pick up my results tomorrow. I have to head down to BMC to get some stuff to drink for the CT so a quick jaunt to the hospital is in the cards.
Dr. B also gave me a fast once over. Said many tender spots are also fibro spots but didn't say I have it. Who knows. It seems the Prednisone did help. After being off of it for awhile now I can honestly say that while it definitely did not take away all of my pain and I did have to take the Percocet too, there was a slight improvement. Not enough to endure the massive GERD issues, though. My pinky benefited from the Pred and now it's back to yelling at me. Grumpy little thing.
Wednesday, June 13, 2007
Still kickin'
It's been forever since I blogged. The last time I was on the Pred, waiting and hoping for something to kick in. Finally, after giving the steroids a try for over two weeks and not seeing a ton of improvement--plus having reflux issues that were horrid--I stopped them. I had called Dr. B on Tues. as per directed, told the nurse how I was doing w/the Pred, and never heard back (well, Dr. B did call on Fri. but I was gone). I got sick of waiting to find out what I should be doing or shouldn't be doing, so I tapered off the Pred myself. Of course I did it way too fast and my blood sugar paid dearly for it. Between the stress of this past weekend for my job (pretty much everything that could go wrong DID), stopping the Pred, and the resulting health issues of doing so, I am AMAZED I didn't end up in the hospital. Man did it suck. My heart was racing, my head felt like it was going to explode, and I was jittery as if I had drank a whole pot of coffee. I had a helluva time keeping my blood sugar up (doesn't help that I have Hypoglycemia to begin with), especially since I didn't feel like eating as I was nauseous. In the end the Pred wore off and my adrenal glands bounced back as best they could.
I will say that I think the Pred probably helped more than it seemed as after going off of it I've been more sore than I was. However, it wasn't nearly enough to make me want to go back on it. My throat is still sore and I'm still fighting reflux.
My appt. w/Dr. B was yesterday, but they called to cancel/reschedule so I will see him tomorrow. I have a feeling I will leave tomorrow w/no answers and am really not looking forward to this visit. DH keeps asking me why I don't just see a different doctor if I feel like Dr. B isn't listening to me but I did say I would see Dr. B one more time and decide from there. I don't need a doctor to hold my hand, or act sorry for me, or coddle me--but I do need a doctor that I believe is reading my chart to try and link things together (that's why I filled out the paperwork in the first place), knows what he/she is doing (as in doesn't tell me that they have no idea what a certain test is), and honestly cares about his/her patients. That's not too much to ask for, right?
Both eyes have taken turns with the redness and pain again. The other night when I went to bed even I was shocked at how pink/red my right eye was. This time the entire white area was colored in. Last night I was this () close to looking for the eyedrops as my left one was killing me. Instead I decided that it would take too much effort and as I've been exhausted again, I rode out the pain.
This past weekend was incredibly difficult for me. I had three weddings (two to decorate and tear down, and one to shoot). If it had not been for my dad and husband doing a majority of the decorating I have no idea how I would've made it. Actually, looking back I have no idea how I made it either. The sheer stress and physicality of everything was overwhelming for my tired, hurting, body. I am still recovering from it all. I am aching all over and having to take my Percocet in the mornings again plus I'm super sleepy. Even going to bed at 10 p.m. and getting up at 8 a.m. isn't enough rest. Up until today I was moving like an 80 yr. old...slow, cautious, every step hurting me. I broke down and bought some Crocs as I hear they are fabulous and thus far I really like them. Can't make an exact call just yet since I'm sore all over.
There is no rest for the weary, however, as we have a big event this week/weekend, another small one next week (which I will have to decorate by myself), and a fairly intense wedding the following weekend. Thankfully July is much quieter and I plan to keep it that way as much as possible! Aug. is semi-busy and then we are slammed once again in Sept. and Oct.
I really hope I can get on something that works starting this week!
I will say that I think the Pred probably helped more than it seemed as after going off of it I've been more sore than I was. However, it wasn't nearly enough to make me want to go back on it. My throat is still sore and I'm still fighting reflux.
My appt. w/Dr. B was yesterday, but they called to cancel/reschedule so I will see him tomorrow. I have a feeling I will leave tomorrow w/no answers and am really not looking forward to this visit. DH keeps asking me why I don't just see a different doctor if I feel like Dr. B isn't listening to me but I did say I would see Dr. B one more time and decide from there. I don't need a doctor to hold my hand, or act sorry for me, or coddle me--but I do need a doctor that I believe is reading my chart to try and link things together (that's why I filled out the paperwork in the first place), knows what he/she is doing (as in doesn't tell me that they have no idea what a certain test is), and honestly cares about his/her patients. That's not too much to ask for, right?
Both eyes have taken turns with the redness and pain again. The other night when I went to bed even I was shocked at how pink/red my right eye was. This time the entire white area was colored in. Last night I was this () close to looking for the eyedrops as my left one was killing me. Instead I decided that it would take too much effort and as I've been exhausted again, I rode out the pain.
This past weekend was incredibly difficult for me. I had three weddings (two to decorate and tear down, and one to shoot). If it had not been for my dad and husband doing a majority of the decorating I have no idea how I would've made it. Actually, looking back I have no idea how I made it either. The sheer stress and physicality of everything was overwhelming for my tired, hurting, body. I am still recovering from it all. I am aching all over and having to take my Percocet in the mornings again plus I'm super sleepy. Even going to bed at 10 p.m. and getting up at 8 a.m. isn't enough rest. Up until today I was moving like an 80 yr. old...slow, cautious, every step hurting me. I broke down and bought some Crocs as I hear they are fabulous and thus far I really like them. Can't make an exact call just yet since I'm sore all over.
There is no rest for the weary, however, as we have a big event this week/weekend, another small one next week (which I will have to decorate by myself), and a fairly intense wedding the following weekend. Thankfully July is much quieter and I plan to keep it that way as much as possible! Aug. is semi-busy and then we are slammed once again in Sept. and Oct.
I really hope I can get on something that works starting this week!
Wednesday, May 30, 2007
Upped the dosage
Yesterday was my first day of being on 10 mgs. of Prednisone instead of the 5 I had been on. I only needed to take half a Percocet in the late afternoon and am hoping it was because of the Pred, but not counting any chickens yet. I am definitely ready for a pain pill right now, yet I'm not going to take any until I'm really hating life. Of course I wouldn't be surprised if the pain factor is thanks to me having to scoop up dog poop and pick up dog toys/bones (plus move a heavy stepping stone) so that the yard guys could do their stuff. Had they not come a day early then DH could've done most of the heavy lifting tonight. Alas, that's not the case but life goes on.
I still have the sore throat and last night I noticed some reflux-like symptoms going on. Had a nasty taste in the back of my mouth/throat...like I was going to throw up...and felt nauseous. I'm assuming it's breakthrough reflux. I'll mention it to the rheumy but for now I can deal. Just so long as it doesn't get worse, that is. I'm a little worried about my hypoglycemia as it seemed to flare up yesterday which is kind of new for me. I have read the Pred can mess w/your blood sugar so I'll keep an eye on things and see if I can keep everything under control w/diet like I have in the past.
I'm still exhausted and hating it. I took a 1/4 of a Flexeril the other night to see if it would help me sleep better, however I woke up feeling even more tired. If I don't get my one cup of coffee a day I am screwed and even that doesn't help all that much. Seriously, the exhaustion sucks.
I still have the sore throat and last night I noticed some reflux-like symptoms going on. Had a nasty taste in the back of my mouth/throat...like I was going to throw up...and felt nauseous. I'm assuming it's breakthrough reflux. I'll mention it to the rheumy but for now I can deal. Just so long as it doesn't get worse, that is. I'm a little worried about my hypoglycemia as it seemed to flare up yesterday which is kind of new for me. I have read the Pred can mess w/your blood sugar so I'll keep an eye on things and see if I can keep everything under control w/diet like I have in the past.
I'm still exhausted and hating it. I took a 1/4 of a Flexeril the other night to see if it would help me sleep better, however I woke up feeling even more tired. If I don't get my one cup of coffee a day I am screwed and even that doesn't help all that much. Seriously, the exhaustion sucks.
Friday, May 25, 2007
Day 3
This morning marks the third day that I have been taking Prednisone. I can't say much has changed except that I get huge hunger jags ever so often. Last night I was eating like a pregnant woman. Not good for the waistline but at least it wasn't overtly unhealthy.
Yesterday was a crap day for me pain wise. I finally gave in and took half a Percocet around noon, which is way early for me. Usually I can stretch it out until around 4 p.m. or so, take a half of one, then take the other around 8 or 9. I even thought I'd be clever and take just the one half at 12, then wait until later to take the other half..like much later. I was in so much pain by about 3:30'ish that I would've taken a shot in the eyeball just to make it stop. I wish I knew what was setting me off so bad as today I am feeling very achy already and it's not even 10 a.m. We have two events to decorate but thankfully the term decorate is being used loosely here as one wedding is just renting the tiki bar from us while the other is just having me cover a few curtains w/chiffon (thank God!). My dad will be doing the tiki bar assembling but I'll be going down to Sunriver and working alone so that he can pick the kids up. I haven't taken any painkillers yet, however I have a feeling I will be before too long, unfortunately.
I had hoped that I would see improvement by now, but no such luck. I'm guessing it could be that given it's such a low dose I might not see any changes until I "up" the dosage. I just hope I don't have to up it too high.
The only "side effect" I've seen other than the hunger pangs has been a slightly sore throat. That could be from the weather changes too, but I didn't have it until I started taking the Prednisone so they may be related. Fingers crossed I start seeing improvement soon.
Yesterday was a crap day for me pain wise. I finally gave in and took half a Percocet around noon, which is way early for me. Usually I can stretch it out until around 4 p.m. or so, take a half of one, then take the other around 8 or 9. I even thought I'd be clever and take just the one half at 12, then wait until later to take the other half..like much later. I was in so much pain by about 3:30'ish that I would've taken a shot in the eyeball just to make it stop. I wish I knew what was setting me off so bad as today I am feeling very achy already and it's not even 10 a.m. We have two events to decorate but thankfully the term decorate is being used loosely here as one wedding is just renting the tiki bar from us while the other is just having me cover a few curtains w/chiffon (thank God!). My dad will be doing the tiki bar assembling but I'll be going down to Sunriver and working alone so that he can pick the kids up. I haven't taken any painkillers yet, however I have a feeling I will be before too long, unfortunately.
I had hoped that I would see improvement by now, but no such luck. I'm guessing it could be that given it's such a low dose I might not see any changes until I "up" the dosage. I just hope I don't have to up it too high.
The only "side effect" I've seen other than the hunger pangs has been a slightly sore throat. That could be from the weather changes too, but I didn't have it until I started taking the Prednisone so they may be related. Fingers crossed I start seeing improvement soon.
Wednesday, May 23, 2007
Late night phone call
Last night while watching a DVR'd episode of Entourage, the phone rang. It was almost 9 p.m. I figured it was one of my friends and when I went to answer it I saw on the caller ID that it was none other than my rheumy. You could've knocked me over with a feather. I quickly told DH to pause the show and answered the phone. He apologized for calling so late. I was just damn glad he had called. My stomach did flip flops as he went through my test results worried that he was going to tell me that he couldn't help me. Instead he said that he believed something was going on--he just isn't sure what. Nevertheless, he has put me on Prednisone for two weeks to see how I do. Thankfully the dose is low (5 mgs. once a day for a week, then 10 mgs. once a day for a week) so I'm hoping to escape the side effects. Lord knows I don't need more hair growing in places that shouldn't have hair, or liver problems, or blood sugar problems, or, or...the list goes on.
The one thing that has me worried is that I asked him about my Leukopenia (low WBC and Lymphocyte counts) and my Alpha-1 being low. For the first concern he said he didn't know what to make of it. For the second he said he didn't know what Alpha-1 was. Scary? I don't know. I hope that he is as methodical as rumored to be and jumps on this shit and figures it out because I want to know. Granted, I'm really, really happy I am being treated and that is what is important. Yet I also want to be sure that we're not missing anything and it would be nice to have a diagnosis. For now I'll settle on trying something that could quite possibly make me feel better. I still have to take my Percocet as I thought I couldn't mix the Prednisone w/the Percocet and thus didn't take any tonight. BIG mistake. HUGE. While the Percocet does not stop, nor help, the inflammation it does take the edge off and makes the pain much more bearable. Without it my joints and muscles literally scream at me. Picture the worst flu you've ever had. One where you were sure your body would be turned inside out. Then take away the vomiting, high fever (a low one is okay), runny nose, watery eyes, or anything else that would say "Yep, that's the flu" but keep the pain. That's me. Not a good way to live. And I, a self-professed pill hater and who abhors the thought of being reliant on any type of drug to make me feel better, has given in. I'm not fighting it anymore. Not worth it.
Dr. B asked me to keep track of my symptoms over the upcoming two weeks. Should be easy enough.
I went ahead and sent off a request for my medical records from OHSU. We'll see what those have to say.
As a side note, I am taking Pepcid AC as a preventative for the Prednisone. The pharmacist warned me that it will be worse the NSAID's. SWEET! So long as the Pepcid works I'll do my best to pretend my stomach is not being ruined by yet another drug.
The one thing that has me worried is that I asked him about my Leukopenia (low WBC and Lymphocyte counts) and my Alpha-1 being low. For the first concern he said he didn't know what to make of it. For the second he said he didn't know what Alpha-1 was. Scary? I don't know. I hope that he is as methodical as rumored to be and jumps on this shit and figures it out because I want to know. Granted, I'm really, really happy I am being treated and that is what is important. Yet I also want to be sure that we're not missing anything and it would be nice to have a diagnosis. For now I'll settle on trying something that could quite possibly make me feel better. I still have to take my Percocet as I thought I couldn't mix the Prednisone w/the Percocet and thus didn't take any tonight. BIG mistake. HUGE. While the Percocet does not stop, nor help, the inflammation it does take the edge off and makes the pain much more bearable. Without it my joints and muscles literally scream at me. Picture the worst flu you've ever had. One where you were sure your body would be turned inside out. Then take away the vomiting, high fever (a low one is okay), runny nose, watery eyes, or anything else that would say "Yep, that's the flu" but keep the pain. That's me. Not a good way to live. And I, a self-professed pill hater and who abhors the thought of being reliant on any type of drug to make me feel better, has given in. I'm not fighting it anymore. Not worth it.
Dr. B asked me to keep track of my symptoms over the upcoming two weeks. Should be easy enough.
I went ahead and sent off a request for my medical records from OHSU. We'll see what those have to say.
As a side note, I am taking Pepcid AC as a preventative for the Prednisone. The pharmacist warned me that it will be worse the NSAID's. SWEET! So long as the Pepcid works I'll do my best to pretend my stomach is not being ruined by yet another drug.
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