Dust sucks

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.

New horizons

The month of September was a total whirlwind for us. Between decorating a ton of weddings/events, Ryan was offered the job up at the Portland plant and two sisters decided to buy CW&E. The past two weeks have flown by as we went house hunting, have worked to get papers drawn up for the sale of the business, and are continually cleaning/throwing stuff away/packing/getting the house in shape to sell. Our move date is set for Oct. 24th as of right now and will be here before we know it. Amidst all of this my blood pressure decided to level off--or at least it feels that way--and I've had some relief from the cortisone injections. Unfortunately my bones have still been very achy and I had to stop the Zine again due to breakthrough reflux. I haven't told Dr. B about it yet as part of me figures he'll tell me to start it back up again.

I have been feeling ill since yesterday--stomach issues, fever, chills, achy, and super tired. Not sure if this is another flair or if I actually have a bug. It has hit at a bad time since every day counts and I need what little energy I do have so I can get stuff down around here. We also have three more events this month before the new owners take over as well. Which means cleaning glassware, putting stuff up, taking stuff down, etc.--more energy expenditures and less time for house-stuff. Not that I'm truly complaining in that the extra money will be nice!

In between I have decided to throw a party to thank my vendors for referring jobs to us, say goodbye to them, and introduce them to the new owners. I have put all the decorating duties in the hands of the ladies buying the 'biz so they can show off their talents yet I am still fully involved in setting everything up. Crazy, crazy!

Cortisone side effects

Silly me didn't think to truly research about the side effects of having two SI joint injections. So when I started having side effects I just thought I was going crazy.

Until today...when I saw Dr. B (my rheumy)...and he put two and two together for me. And I no longer felt crazy. Well except that I should've "known better." I've been having symptoms of elevated blood pressure and lo and behold, today my reading was 115 over 90. The poor nurse took it again as I usually have very low blood pressure (so low that nurses almost always take it twice, unless they've seen me before, and ask "is your blood pressure usually very low?"). She even pulled up my past readings before taking it again as she was sure I'd never had an elevated reading before. Granted, it's not sky high, yet for me it was unusual. Throw in the pounding heart, feelings of anxiety, head feeling "full" at the bast of my skull, etc. and so forth and a bit of edema and voila...my body is not liking the steroid. I had labs drawn on Sat. so that Dr. B could have those to check for today and they were all over the place. Elevated WBC and several other tests were elevated. At first he couldn't figure it out. Then it clicked...the steroids. Apparently this can happen and isn't surprising.

My rheumy said not to worry, that it would blow over, so I'm assuming it will--although I think I'll call my ortho tomorrow to be sure--but I just hope it blows over soon. My right leg feels all wonky and my right foot keeps swelling. I hate feeling anxious and "out of it" like I do. Again, nothing bad just enough to annoy me.

All of this and still no relief from the shots as of yet despite being on day 6 after having them done. Is that my luck or what? ;o) Good news is that my liver enzymes are continuing to hold at normal. At least part of my body is behaving.

Day 2/3 after the shots

I am still having quite a bit of alternating pain in the SI joints. Sometimes it's the left one, pinching/burning, and other times it's the right. Either way I'm still quite uncomfortable. Nothing that throws up a red flag and says "get thee to thy doctor right away" mind you. There is no redness or swelling so I'm assuming it's just the after-effects of having needles inserted into inflamed joints. I did read tonight that it can take 5-7 days before the shot kicks in and I've read even longer. I will say that tentatively I've noticed my legs have not been nearly as achy. Course that may change as the stabbing pain in my pelvis that I'm focusing on goes away. ;o)

My feet/ankles have been swelling a bit. The other night my right foot was pretty big. Like a troll foot. Or what I imagine a troll foot would look like. I got it...Hobbit! Hobbit foot! Something new...and hopefully something that doesn't last.

I started back on the Sulfasalazine last night. I am slated to see Dr. B on Mon. of next week so I figured it was best to start it back up again. Still having pain in my liver, enough that it's gotten my attention again. If I have enough energy I plan to head down to St. Charles and do the blood draw tomorrow. I wanted to do it today but that was not happening. Between being super sore and tired I opted to stay home and catch up on a few things that needed to be done around here. I did take it easy, yet accomplished quite a bit for the pain/fatigue level I'm in!

Speaking of which, the fatigue does seem a tad bit better. Would be nice if the fog and tiredness went away to the point that I could clean, run errands, and have fun again!

My TMJ has been acting up. I think it's from the weather...or maybe I'm clenching my teeth at night. I ate a chewy bar today and it felt like I had been gnawing on leather for four hours straight. Achy and stiff. Should've had him inject some steroids into my jaw. Talk about ouch! Could be worth it, though.

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!

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.

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.

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.