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.

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.

A step in the right direction

Got the results of my liver panel bloodwork and it looks like my ALT was only two points above normal, so that's really good. The AST and everything else was normal, which is how it's been for a bit anyways. I'm still waiting on my records for my biopsy. The hospital changed a bunch of things so that now instead of going in, requesting what you need, signing a release, and walking out with your paperwork, you have to go in, sign a release, and wait. They also implemented a fee for each time you get your records. When the person in charge of handling all of this called to verify what I needed and my address I asked him about the fee and what they did for people who couldn't afford it. I was told that they "make deals" with people. Okay. So it's more of a guideline than a rule, eh? He said that he wouldn't charge me, which was nice considering how much the cost of everything has added up, and would put them in the mail that day (Monday). I still haven't received them. If they haven't arrived by tomorrow I'm going to call and see if I can't go down there and pick them up myself.

The GI's office agreed to call in one month of Questran for me. Why they couldn't just do another standing order is beyond me. I will most likely need to be on this for the rest of my life so it annoys me that they are making it difficult.

The Aciphex seems to be doing well for me. My throat is ever so slightly sore at times, yet much better. I also haven't been having the reflux like before. It's been nice not having that big issue to deal with on top of everything else.

Surprisingly I've started having a bit more energy. Nothing to get excited over, just enough that when I drink my coffee I actually get a few things accomplished. Been awhile since that has happened.

Arthritis-wise the achy legs continue. Some days are better than others. No one from Dr. B's office has called about me stopping the Sulfasalazine and what they want me to do. My SI joints have been acting up here and there but the cortisone shots still scare me. I have no doubt those will suck.

Interesting development

Got a call from the rheumy's office today but it wasn't about me stopping the Sulfasalazine (yes, I finally called to let them know that--yesterday). Instead the girl I talked to said that NP B had called them requesting my test results. I found this highly interesting given I had already signed the paperwork and was told they would be getting said results well over a month ago. Obviously they never did that. Plus, it makes me wonder if the labwork drawn yesterday showed continued elevated liver enzymes. In looking back there have been 4-5 AST and ALT tests that were above normal all since 2006. And I noticed that the ALT has continually risen instead of going back down like my AST had since last year. I hope to get all copies of my tests this week, yet it may have to wait until next week as I don't want to make two trips--and I really want my liver biopsy stuff finalized.

I also started a new med, Aciphex, for my GERD issues. Fingers crossed this one works and doesn't cause any side effects!

This afternoon I put in a call to NP B's office to inquire about getting the prescription for the Questran since she forgot to give it to me, and I wanted to cancel my appt. with her. Unfortunately I had to leave a message and no one called me back. My hope is that NP B called in the prescription for me and that tomorrow I'll get a phone call stating as such...then I can tell them I have no desire to see that woman ever again. I do realize that I have to tread lightly as I can't just go pissing off the only GI practice in town. That sucks.

When did patients become the bad guy?

I swear, it seems like there is something in the water here--or maybe it's just a change of times--but I am so tired of being talked down to and treated like dirt from people in the medical profession. There are a few good ones in town that do not fall under this category, mind you. However, today I was once again reminded of why I really dislike the one NP at BMC's GI dept.

Before my appt. this morning, I called the GI dept. to make sure they had all of my test results from my biopsy last week. The last thing I wanted to do was have a repeat session of NP B having a semi-fit because she couldn't "access" any of my results. The gal I talked to was able to find out that while the biopsy stuff hadn't been finalized yet, they could at least get a verbal to the doctor. So off I went. When NP B came in she started off by immediately saying, "I don't have your liver biopsy results yet." Sensing what was coming I very politely informed her of what I was told this morning as I figured it was possible she did not know about the verbal info.

"You didn't let me finish!" she retorted in one of the rudest tones I have heard. I apologized to her, though not nicely I might add. "You interrupted me!" she berated again. Once again I apologized as she walked out of the room. By this point I was so ready to leave and seething inside. I should note that I can put up with bitchiness and even rudeness to quite an extreme--but this was just assinine. NO ONE deserves to be talked to this way. Especially by someone who is supposed to have your well-being in their hands. The one thing that kept me glued to my seat was wanting to know the test results. Looking back I should've just walked out.

Finally she returned and had to get another jab in at me, "What I was trying to tell you before you cut me off," and proceeded to inform me that my biopsy results as of right now show no significant signs of liver disease. This is, obviously, good news. With that however, she informed me that she was going to be referring me back to my GP. Why?? My GP doesn't specialize in GI issues. Regardless of whether or not I have cirrhosis at this point in time does not negate the fact that something is going on with my liver. So of course we went back and forth on this issue. Her negating that I even have Alpha-1, me asking her to stake her reputation on it (her of course refusing to do that...surprise, surprise), she saying that I probably have Fatty Liver (hello...I weigh 135 and you said I had anorexia, so where's the poor diet and obesity associated with Fatty Liver??), and so it went. NP B asked how my biopsy went. When I told her all she said was, "oh." No, "How are you doing now?," or "I'm sorry you went through that," or "That seems odd, maybe we should discuss/note this,"--nothing. Just "oh." Lovely lady, really.

I tried to nail her down on a diagnosis or something. She then stated that some of her patients just have an enlarged liver and elevated liver enzymes for no reason. Well, fine, if that's me then what? What do we do? Couldn't get an answer for that one. NP B did her typical, "I don't have your (insert specific test here) result," deal but when I promptly opened my very large binder containing almost all of my lab work and offered her a copy of it she'd either magically find said test result or pretended as if she didn't hear me.

Eventually she left to get me some samples of some pills for my reflux. I could hear her complaining about me to the doctor and lo an behold, she comes back without any pills but with Dr. H on her heels. By this point I've already shut down. I'm so tired of conflicting reports (more below), arguing, and out and out arrogance and rudeness that I just don't care anymore. Dr. H goes on to say how my liver biopsy stuff looks good thus far, no signs of Alpha-1 in the liver but they sent out some samples so maybe there might be, and that the right lobe of my liver is enlarged...not the left. He tells me that I have a congenital defect that I've had since birth. Oh this gets laughable here. For one, according to the CT done back in March of 2006, my liver was normal. Other CT's I've had have never stated that my liver was enlarged at all, nor did it ever state that the right lobe is larger than the left. But in 2007 the CT now shows enlargement. So riddle me this, good doc, why was it fine a year ago and now not so fine? Wouldn't you know I didn't think about this until after the appt., so I didn't get to ask him. I did ask if having this congenital defect would cause pain. "No, typically you never know you have it." he says. So why am I in pain? No answer there. What about all my other symptoms? According to them it's most likely not related to my liver. Okay, I give them that one...maybe. With the arthritis issues there is bound to be some overlapping crap going on, but give me a break. Some of the stuff I'm going through is well-tied to the liver.

Lab tests were brought up and it sounds like they are only aware of two abnormal liver panels. I have more than that. I offer these to NP B--she walks away like she didn't hear me.

In the end I walk out with samples of pills for reflux, a follow-up appt. in 3 wks. (soooo canceling that one), and basically ready to give up. This is the only GI practice in my town and I have no faith in them whatsoever. My plan is to wait until my results are back, get copies of everything, and plan on seeing Dr. Z up at Portland when my time comes.

Re: conflicting radiology reports--confusion abounds here for me. As I stated earlier, the CT in '06 said nothing of a cyst nor enlargement. The CT I had back in June said that the cyst in my liver was unchanged from the scan showing it originally done in 2006. So it was there in '06, the radiologist just either didn't see it or think it was significant enough to put in his report. Then you fast forward to last week and again there is no mention of the cyst. Did it disappear? Did the radiologist not see it? Did he see it but not put it in the report? How can I trust any of these people? You would think that the radiologist from last week would've looked for the cyst and then put in the report, "Cyst gone" or something to that effect. Instead I'm left to wonder 1.) if there really ever was a cyst, 2.) if there was, is it gone?, or 3.) is it still there but not being noted?

Cherry on top? Ryan's car got keyed this weekend. Maybe from one of the neighbors as they seem to hate us for no apparent reason. And the dog pissed in her crate while I was at the doctor's. I'm so close to going insane.

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.

That sucked

I'm alive but I can't say that I EVER want to go through that again. I honestly went in thinking it was going to be nothing compared to my bone biopsy and ended up surprised at how much pain I was in. From the beginning...

Ryan and I arrived at check-in a little before 10 a.m. Went through the paperwork, then the lab folks came down and drew some blood to check my clotting factor. While we were waiting we looked over the reports by NP B (the one I can't stand). It was obvious she knows nothing of Alpha-1 and again referred to me being anorexic. Whatever. I got a little heated over that. After I got the first poke we went down to radiology and waited a bit. They came and got me, took me into the room, went over everything, and started the scan. During this time they were waiting on the results from the bloodwork so we hung out for a bit. Next thing I know I'm having the IV started, getting more u/s scans done, and the doc comes in. He talks me through everything, scans me as well, marks the area, and we get down to business.

The lidocaine stung a bit as usual then the versed and fentanyl kicked in so I was relaxed. The first couple of punches I didn't feel at all. Just a little click and voila. Around the 3rd or 4th punch the pain hit big time. Tears were flowing and it took all I had not to writhe around on the table. They stopped everything immediately and I was sent down for a chest xray. My arm felt like it was being ripped off and my liver was equally pissed. The only thing I could equate the pain and feeling to was labor--10 cms. labor. I would've done anything to make it stop. I didn't cry during my bone biopsy and I didn't cry when I was 10 cms. dilated in natural labor with Megan. But I cried yesterday. The nurse had given me more fentanyl but it didn't do a thing. For the chest xray they had to sit me upright which was oh-so-fun.

Thankfully I didn't have a collapsed lung and there were no signs of bleeding. Unfortunately they couldn't figure out why I was in so much pain. The only thing they could surmise was that given my liver is enlarged and already causing pain that it was heightened by being poked. Later the radiologist said the bag surrounding the liver may have torn as well which would cause intense pain. The nerves that run up to the right shoulder were obviously angry. Honestly I think the shoulder pain was worse than the liver pain.

I was given morphine which finally allowed me to breathe again and sent down to extended recovery. Typically they keep you for 2 hrs.--I was there for 4. While there I was given another shot of morphine and then followed that up with two vicoden. I don't think I've ever had that many pain meds in me. Ever. The pain was going back and forth between 6-9 and for awhile I thought that moving made the pain come back. I had dropped my vicoden and when I sat up a bit to see where it went, I was in agony again. Tears, "ow's," and more swearing that I would never do this again. Before they released me I was sent down for a CT as my pain level was still 7-8. That sucked big time. Raising my arms above my head and having to breathe was almost impossible. I did it, though. I cussed quite a bit too. Again the CT looked normal which was a relief and again the radiologist said that he must have really irritated my liver and the nerves around it. We agreed that I should go home and see if I could get rest there.

Home at last. Had a few "flares" that brought me to tears and quickly discovered that laying down brought on the most amount of pain. Around 8:30'ish I had Ryan put on a movie for me in our bedroom and attempted to lay in bed. That didn't work out so well. Once again I was crying, saying "ow" over and over again, and in horrendous pain. I had him adjust the pillows and grab another one off the couch which he wedged under my right side and the pain lessened tremendously. Megan hung out with me and watched Steel Magnolias for about an hour. I took a percocet, then waiting a half an hour and took another half. After that kicked in I was able to sleep some. I did wake up quite a bit with an itchy belly or a tweak here and there, but overall it was so much better than I had envisioned.

Ryan took today off so he could take care of the kiddos and help me out. I'm feeling so much better today than yesterday. Still sore but nothing like yesterday--not even close! I really hope they find something from this because I have no desire to go through another liver biopsy. Not without pre-emptive morphine dosing!

Wee bit nervous

Just a bit. Not a lot. Not scared of the pain or anything, more the possible complications part. My dad will be staying with me and the kids in the afternoon just to be safe. Yay for dad's who are nurses too! :o)

As a side I got to shoot the cutest little girl today and her mom and dad. I was worried I would be too exhausted to hang in there but turns out that it really perked me up and made my day bright! Yay for adorable babies who have cool moms!!

Countdown

T-minus 1 day, 12 hours and counting until I get holes punched into Hannibal Oliver. I talked to a tech at the hospital yesterday and he informed me I would not be having a trans jugular biopsy (he was shocked I even knew what that was), would be getting good drugs, and would be able to sit up (and even pee if need be) in the recovery room. I may actually get some oh-so-tasty hospital food. Now what more could a girl ask for?! Ryan will be with me the whole time. The kids will be at my dad's, then he'll return them when I get settled back in. That way they can help me out as need be, which shouldn't be much.

I thought for sure I was going to die this past weekend. Between my incredibly physically demanding Fri.-Sun. schedule and the stress that it all brought, I also woke up Sat. morning around 4:00 a.m. having an apparent panic attack. It had been so long since I had one that I thought something else must've been horribly wrong. My heart was racing, I felt tingly and like I was on fire, and was convinced I would end up in the ER. I did my best to stay calm and eventually fell back to sleep. When I mentioned this to my dad that day he said it sounded like a panic attack and wasn't surprised I'd had one given all that we were doing work-wise.

Going out of order here--I also had a hideous migraine of sorts on Fri. while decorating. When I sneezed it felt like my head was going to break open. Not fun at all. My dad actually got worried. Said I should mention it to my doctors. This isn't the first time, however I was able to knock it out with one Advil. Shocked the hell out of me! I should've known it was coming as I had a bad pain behind my right eye and that particular headache seems to get me back there as well. Instead of being in the front, it's all located towards the base of my skull, more so on the right side than the left, and evil. My right eye has been a little "flarey" as of late too.

On Sun. I hit a wall. Big, brick, and not moving. I took a nap Sun. day after we finished working and did lunch. Then that night I was in bed around 10 p.m. and slept until after 8 a.m. I took a little doze on Mon. and was actually up until after 11 p.m. because we watched a movie. I've done nothing but want to sleep since this weekend. I also had a bout of nausea that was worse than any I've had thus far. I was so sure that my dinner wasn't going to stay put that I didn't venture far from the bathroom.

My throat is still hurting at various degrees. I'll be mentioning it to my GI people when I see them next week. My guess is that I have an ulcer or am getting one or just have really bad reflux. This stuff sucks.

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.

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.

Seriously

I tried "warning" the GI dept. about my A1AD so that the Nurse Practioner I was seeing could read up on it, yet it fell on deaf ears. They just assured me that if she didn't know about A1AD she would ask the doctors. And I'm seeing her why? Blah. So my appt. rolls around and I go in to see NP B. She's got a bad attitude from the start, yet I don't care...I'm just hoping she's gonna surprise me and tell me what the next step is in finding out how bad my liver is. Instead when I tell her I have A1AD she tells me, "That's a lung disease. We don't treat the lungs. You'll have to see a Pulmonologist instead." Oh yeah...here we go. I correct her and explain that A1AD can indeed affect the liver. She agrees but has to put a little "but that's EXTREMELY rare" on the end of it. Not really and does it matter? I mean if you have a patient that is A1AD, has had elevated liver enzymes for over a year, has an enlarged liver, and has tested negative for all the obvious diseases that cause liver damage does it matter if the only thing that makes sense is rare? I may be the only case she sees yet that won't change that if the Alpha-1 is causing this that it is what it is. I digress.

The moronic statements continues as she asks me about heartburn/GERD and what I'm taking for it. When she asks if I take the Prilosec w/food I tell her "No. I don't have an appetite in the morning anymore. Been that way for at least a couple of months and that's not like me." She launches into a dramatic, somewhat freaked out lecture about how I HAVE to eat. Uh...yeah, I would, if I wear hungry and not nauseous. The next words out of her mouth still have me angry and shocked. "How long have you been anorexic for?" Seriously. I was dumbfounded. First, I wear a size 8--sometimes a 6 if I go to Old Navy (love that)--and weigh roughly 135. Second, when I was in high school I had a nasty rumor spread about me that I was anorexic because I weighed 98 lbs. and the girl didn't like me. I wasn't anorexic then (I had a kickass metabolism and was very, very active) and I sure as hell am not anorexic now. The only words I could form were, "Excuse me?" and she sighed heavily and said, "Okay fine then...how long have you been without an appetite." NP B. is a real gem, I tell ya what. I later asked my dad (a nurse) if anorexic has a different clinical term that I didn't know about. He said it means not taking in proper nutrition to sustain life. Still not connecting me not having an appetite in the morning to not sustaining my life. I've tried, there are no dots.

Then NP B. had to say over and over again about how she didn't have ANY of my records and therefore couldn't do ANYTHING for me. No matter how many times I explained that my blood tests and CT scans were all done at either the hospital or the actual clinic I was sitting in at that very moment, she refused to hear me. Other doctors from the same clinic had accessed my records as had docs from outside the clinic. They had no problems. Yet I guess this was too much for NP B. to handle. She did give me a "physical" though. Lasted all of 2 mins. I think. The woman barely pushed on my side and proclaimed that she "couldn't even feel" my liver. Again, funny given that two other doctors felt my liver quite easily although they did push harder. Maybe that was the issue. (insert sarcastic smiley here)

I told NP B. that I was extremely exhausted, had quite a bit of pain and uncomfortableness in my right side, was very bloated, and had "brain fog." Her diagnosis? Unrelated to my liver. Remember, according to her there was nothing wrong with my liver as the ONE test result she could access wasn't high enough for her (but it was indeed elevated) and she couldn't feel my liver. The bloating? Oh that's from dairy. Ya know, that 1 cup of cappuccino a day I drink...yeah, that's it. Or my medicine that I've been on for over a year and never had bloating like this. Totally! No way is it because my liver is failing. The rest of the symptoms she had no answer for yet assured me she didn't think they were caused by my liver.

Taken from the American Liver Foundation website: "Alpha-1 may also appear in late childhood or adulthood and be detected because of fatigue, poor appetite, swelling of the abdomen and legs or abnormal liver tests." Now call me an idiot but why is it that I know more about liver failure than a GI Nurse Practioner? One of the other major symptoms is diarrhea. TMI folks, yet this was one of my very first symptoms that started two years ago. The GI folks think/thought it was IBS despite not having any issues before and it starting suddenly. I've also been having the big "d" again although I've been on medicine for it for a year and a half. I gotta think it's not a good sign.

NP B. did tell me to up my medicine (Questran) after she looked at my eyes. I had my dad look at them and he said there was a bit of jaundice there. Questran is commonly prescribed for jaundice (I was put on it to control "d" after my gall bladder surgery), so we can only assume that if I wasn't on it then I would be as yellow as the sun. I don't have any plans to see if this is true, though. Other than that, she said she'd look over my test results and then call me to go get more labwork done. Total.Waste.Of.Time.

Friday I called to see what I could do to get an appt. with an actual doctor. One who is, coincidentally enough, both a GI and a Hepatologist (liver specialist). Turns out NP B. already spoke with him after my appt. last week. No word on what was said or what, if anything, the plan is for me. Instead I got to find out that Dr. H. is booked until Sept. I practically begged the girl stating that I am getting worse and don't think it would be smart for me to wait that long. She was very sweet and put in an email to Dr. H. in hopes that he'll squeeze me in soon. I guess we'll see how it goes.

I don't think I posted about my follow-up visit w/Dr. B. I actually saw his PA whom I like. I am considered G6PD (Glucose-6 Phosphate Dehydrogenase) Deficient. They want me to start taking Sulfasalazine and try taking the Gabapentin again--though not at the same time. We need to watch for side effects. With the G6PDD there is a chance I could be thrown into Hemolytic Anemia. That would be bad. So I have standing orders for routine blood tests to monitor me. Hopefully this will help my achy joints/muscles with no allergic reactions and/or side effects. The PA tried to pin Dr. B. down for a diagnosis for me yet he said he wasn't ready to "pigeonhole" me just yet. :oD Irregardless he does think I have either Undifferentiated Spondylarthropy and/or Undifferentiated Connective Tissue Disorder. Arthritis...that's all I know. I haven't started the Sulfasalazine yet as I want Ryan to be home w/me in case I have a bad reaction to it. Plus this weekend was so crazy that I didn't want to take it and end up w/horrible stomach cramps, bad "d," or whatever. Hopefully I can try it out on Tues. I would love to be off the Percocet w/all the liver stuff. I'm still at 1 to 1 1/2 pills a day, which is really good considering, yet I've noticed that I'm almost having to take the 1 1/2 pills a day instead of half to one. I don't like it. I know the docs would be "oh seriously, that's nothing!" but I don't like it. Ya gotta do what ya gotta do, I know. And I wouldn't take them if it didn't feel like my freaking legs were being beaten.

I am so ready for some good health.

Answers

I gave in and called Dr. R's nurse on Fri. and explained that DH had gotten job offers in two completely different cities (more on that in a bit), so finding out my test results would be muy helpful if possible. She promised to call and check on them, yet I heard nothing. Thing is, she did call me that Fri.--she just called my business line and when I saw the answering machine light blinking I thought it was another client that had called. I listened to the message on Sun. and the nurse had said she tried to get the results but that they weren't ready yet. I was given the dates of Mon. or Tues.

Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.

Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!

Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.

The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.

The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.

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 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!

Thick in the fog

My brain has left me and I have no idea where it went. But I want it back. Like yesterday.

This morning I had to have my husband help me count my Prednisone because I couldn't remember if I had taken one already...just a scant 10 mins. prior to all of the confusion. I tried remembering. I tried very hard. But no matter what I did, no answer would come to me. I knew what I had been doing, and part of it was familiar, yet I didn't have enough details to know if I had put a pill in my mouth and swallowed it...or not. Counting the pills yielded further confusion as the amount didn't match up at all with what it should have. If I started the pills on a Tues., took one a day for seven days, then by the following Tues. I should have had 23 left. So then you double the dose for 4 days and you have 23 - 8 = 15. I had 16 left. I'm pretty sure I haven't skipped any pills, however if I had I wouldn't remember it now!

So I popped the pill. I am really hoping I didn't just double my dosage in a matter of minutes yet there's not turning back now.

Everything else is the same. I felt like total shit last night. Headache, woozy/hypoglycemia-like feeling, super sore throat, heartburn, and my heart was racing. That may have been exacerbated by the chocolate bar I ate (forgive me dieting Gods...I tried) or it may have been the late dinner and Pred. Who knows. Either way it wasn't fun. Pain is the same. Still achy/flu-y feeling a lot, but seemingly less than without the Pred. I think...it's been so long who remembers anymore?!

This morning my joints are much achier than normal though. Makes me wonder if the brain fog and sheer exhaustion means I'm flaring again and the Pred just isn't kicking it, or what the hell is going on. Where is that damn Magic Pill already?!

Checking in

I can report that I'm noticing slightly less pain and stiffness as compared to being on the 5 mgs. a day, but I'm still in the exhaustion phase and it's gotten worse since my last posting. I have been so tired and so out of it lately that I can't even knit. I can't keep track of things and am starting to feel overwhelmed for the most part. I know it will pass, it usually does, it just sucks in the meantime.

The other symptoms I've posted about are still there (reflux stuff, nausea, sore throat) but I've also noticed my jaw burns at times--in the joints. It's like when you bite into a lemon and you get that weird sensation that you can feel in the muscles of your jaw. I have never had it actually be a part of an everyday thing, so I'm assuming it's from the meds.

I've still been able to keep the pain pills down to about 1/2 a day, which I think is really good. Granted, there are times during the day that I wish I could take one, yet I refrain. Feels like I'm "punishing" my body with all the drugs I'm taking in the meantime, so I prefer to "grin and bear it" as much as is humanely possible.