So much for breathing

As I posted earlier, I've been having trouble with shortness of breath, and my chest being a tad tight. I was managing, though. Then this weekend I baked some cookies and noticed that I was really struggling to breathe. Felt like I had a weight on my chest and nothing I did could give me enough air. I don't know if it was the warm, moist air or what, yet something set it off. I probably should've gone to the urgent care or ER then, yet I kept hoping it would go away on it's own. That night I had some difficulty sleeping and by Sun. it hadn't let up. I was still dizzy and having the pins and needles in my head issues as well. Luckily the urgent care is right down the road and open on Sundays. I told Ryan I was going to go down there to be looked at just to be safe and headed off. When I arrived and told them what I was there to be seen for, they sent a nurse out right away to take my pulse ox. Despite my breathing being so shallow, my pulse ox was at 100%--yay! After a short wait they took me back, did the exam, and the doctor said I "looked infected" after he checked my nose and throat. He didn't go into it anymore than that, nor did he prescribe me anything, so not sure what all is going on there. They gave me a breathing treatment (Albuterol in a nebulizer), which is something I've never had before. I did, however, remember how Albuterol gives you the jitters. I used an inhaler for the exercise induced asthma when I was a kid up until HS. I stopped because I hated the way it made me feel. Very much like a hypoglycemic attack...and those suck. The side effects from this breathing treatment hit me pretty hard. It lasted well over an hour or two--which could be due to my liver not processing things as quick as it should. The doc gave me a prescription for the inhaler which I have yet to fill. I'm researching to try and find one with less side effects. I don't think my body handles steroids so well. My heart was racing and I had symptoms of high blood pressure again. Thankfully it worked! Although my chest is still tight and the shortness of breath is still there, I don't feel as if I'm fighting for air. In the end it was worth all of the crappy side effects. Now if I can just get the pulmonologist to bump me up already...

GI Specialists Strike Two

Last week I called Dr. N at OHSU to discuss my prognosis and ask a couple of questions. I was a tad concerned given the articles I had been reading about NASH seemed to suggest that I had a 1 in 5 chance of developing cirrhosis in 5-10 yrs. While I understand that no one knows how this will all play out, and/or if it will turn to cirrhosis for sure, I was curious to see what Dr. N thought based off of things thus far.

The phone conversation started off nicely enough. I told him that I wanted to know what he thought my prognosis was and he said that typically "this" (re: NASH) takes decades to progress to cirrhosis. For him he was more concerned about the possibility of me developing Diabetes. (As an aside here--I don't understand why he thinks I am Insulin Resistant given he said they NEVER see it coincide with Hypoglycemia. I explained that I was diagnosed as Hypoglycemic when I was younger, yet that seemed to go in one ear and out the other.) I told him about the article I had been emailed regarding MZ Alphas having their NASH exacerbated due to their MZ status...bad idea. After that things quickly deteriorated. From our first meeting Dr. N had seemed put off and very skeptical about the Alpha-1 support lists that I belong to. When I had mentioned some of the information I had learned about Alpha-1 regarding MZ Alphas and liver transplants, he asked where I had found "these people." As if it never occurred to him that there are such lists and groups in existence. I thought that was beyond odd but was willing to overlook it so long as he showed he had an open mind and was willing to even listen to what I had to say--even if it came from my "imaginary friends." (insert rolling eye icon here, please)

Somehow the topic of my liver hurting came up. Despite him telling me in the face-to-face appt. about the bag surrounding the liver, how it's typical for it to hurt as the liver enlarges, and whatnot, he backtracked. Said that he didn't think my upper right quadrant pain was from my liver. Dr. N said he thought I had Fibromyalgia. I'm sorry...I had no idea he was a rheumatologist as well! I then informed him that I had already been tested for, and cleared of, Fibromyalgia. In fact, my rheumy, and two orthos were quite confident that I have spondylarthropy--possibly Ankylosing Spondylitis. Then Dr. N did the typical arrogant, white coat, asshole thing to do. He pulled the rug out from underneath me despite not having ANY of my lab tests, chart notes, doctor's reports, etc. He told me that he wanted to "be real honest" with me...that I had "a lot going on--5 things, in fact" and that he didn't think I had any of them.

Spondylarthropy? No way.
Bile salt diarrhea from having my gall bladder removed? Absolutely not. (nevermind that the medicine I'm on for it ONLY works if you have bile salt diarrhea--otherwise it does nothing)
Alpha-1 Antitrypsin Deficiency? I don't have it!
(Not sure what the other two things are, but I guess I don't have those either)

So like...I'm all cured then, right? I mean, if I don't have any of those things then there is absofuckinglutely nothing wrong with me! SWEET! I can stop taking the Questran, stop taking the Percocet for the pain, and just go back to being normal. He's a freaking GENIUS!!

Needless to say, when I hung up the phone I was in tears. This man made me feel like I was the biggest freakin' idiot on the planet. He made diagnoses and took other already made diagnoses away from me without having the first shred of evidence to back any of it up. The only medical records he had available were my Alpha-1 results, my liver biopsy, and some of my liver enzyme tests. That's it. No CT's, no xrays, no specific bloodwork, nothing that points to what the doctor's I've already seen say. Doctor's that are HIGHLY respected in their fields. What is that saying? When we ASSume things we make an ASS out of U and ME. Yeah...he made an ass out of himself and an ass out of me. I was an ass to think this doctor had the desire to truly get to the bottom of things and to give me good care. Dr. N made an ass out of himself by just being an ass.

I am once again looking for a competent, liver specialist, that will not treat me like I'm an idiot, nor a piece of shit. Someone that actually knows of which they speak. A doctor that will LOOK at ALL of my medical records and hell, maybe even CONVERSE with the doctors I've seen, and then make the diagnosis. I have no problems accepting that I don't have A1AD liver disease--at least not at this point in time. But obviously something is going on and that needs to be watched. And please do not tell me that I don't have stomach issues thanks to the missing gall bladder. Believe me, I have tried to stop that nasty, gritty medicine with a positive "I no longer need this!!" frame of mind many times to no avail. I would love, love, love to not have to rely on any medicine...especially this one...but the medicine does its job because my body obviously needs it. And please stop telling me I do not have Alpha-1. From everything I have read and been told, if your Alpha-1 levels are routinely low, and you have at least one deficient gene, then you are considered A1AD. I DO have A1AD. If you tell me I don't I will instantly know you are not the doctor for me. It does not matter if my liver is not affected by it, or if my lungs are still fine. Alpha-1 is a part of my health regardless of if it's affecting me at this time or not. One more thing...if you are a GASTROENTEROLOGIST then please keep the diagnoses to your specialty. Leave the rheumotological stuff to the rheumatologists. Thank you.

Just breathe

Today I ventured up the hill to OHSU to see Dr. B, my ortho. He's such a nice man. Very warm, listens, and isn't full of himself. I did luck out with the orthos, didn't I?! Anyways, so just like Dr. A told me, Dr. B also said there isn't much more the ortho docs can do for me. I pretty much figured that going in, yet wanted to hear it from his mouth as well so that I knew I'd exhausted all options. Dr. B did bring up fusion surgery but reiterated that it was not something he either did, or recommended. Said he'd have to be in a world of hurt to even consider having it done if it were him. I have no desire to even think about that at this time and hopefully never will.

Diagnosis-wise we're back to the spondylarthropy. He feels that is highly likely and definitely wants me to continue seeing a rheumy. I was given two names and Dr. B said he'd refer me to one. I need to check w/the insurance folks first and check on coverage. So annoying. One thing he did do for me is to measure my chest expansion. I guess this can give an indication as to how my lungs are doing. I thought for sure he'd say all was good but nope...I'm about half of what I should be for someone my age and physical condition. I've been researching some about the "test" itself and it keeps coming back associated with Ankylosing Spondylitis. Ugh. I really liked thinking that wasn't an option. I guess we'll see what the rheumy up here thinks.

Breathing...man I wish I could breathe normally. For the past few weeks it's just gotten worse and I don't think it has to do w/the weather or allergies. Man I hope I'm wrong! The fact that my chest isn't expanding like it should could mean that my lungs are messed up because of the A1AD or it could mean my ribs/chest are fusing. Or maybe I'll get lucky and it will be something simple. I wish, I wish, I wish! Simple would be oh so nice right about now. Simple and curable! Even as I just sit here it feels like there is a huge weight on my chest making it difficult to take in a full breath. I did call Dr. B's (the pulmonologist) office and left a message for him to let him know what Dr. B (the ortho) said. Man, this is getting confusing, isn't it? All the Dr. B's and A's. Forgive me for wanting to keep some things private.

My exertion headaches are still lingering and also becoming more and more prevalent. I am wondering if it has anything to do with my shortness of breath. It would make sense...and could be easily fixed (or so I hope). I feel a little lost out here at times. As much as I bitched about certain doctors in Bend, I was at least established with them, and could get in to see them. Out here I'm starting almost completely over. At times that's okay and hopeful. At other times it's both frustrating and a little scary. Especially when it comes to things like these headaches. They do worry me. And the breathing. I'm not sure that I can hold out like this for another three months.

Oh, and my left thumb joint flared up recently. Very painful and right when I was getting back into knitting. Couple that with my right wrist that is still screwed up, my poor hands are practically useless. I meant to ask Dr. B about my right arm at my appt. and forgot. When I got home I was moving my KitchenAid stand mixer and the thing tipped putting all of its weight onto my right wrist. That was so not fun. Poor thing is never going to heal.

Smack me now

The answer is, no. No I didn't go to the meeting last night. Not because I was too chicken--although that was part of it--but I started feeling really, really crummy last night. Started not too long after I picked the kids up from school. Bone crushing fatigue, headache, nausea, and general crappiness. I was ready for bed last night around 7 p.m.--especially after wandering around Fred Meyer's for over 45 mins. trying to decide on what to get for dinner. I hate that. Going to the store, looking at everything, nothing sounds good, too tired to cook anyways, and yet we have to pick SOMETHING damnit! In the end we went for soup. Easy enough. But the icky feelings stayed around and hung on like stink after a hard workout. Finally I gave in to the fatigue and went downstairs to my lovely Ikea bed.

My alarm went off at its usual time of 7 a.m. this morning. After hitting the snooze button about 3 times I finally drug myself from under the covers and got ready to take the kids to school. I had so many plans for today. Go to New Seasons, get groceries, mail off some CD's for a client, do some cleaning, and anything else that I could squeeze in. Instead I caught up on some DVR'd TV shows and vegged. That's about as much as I could muster thus far. Looks like Ryan will have to grab some dinner for us...his favorite thing to do. (insert sarcastic smiley here) I always feel guilty when I get this exhausted. If I can't pull my weight then I feel like an even bigger burden. Up until now I've been able to keep up with the housework--which hasn't been much given that it's easier to keep things clean and organized when it already starts off that way. But at least it was something. Today there are dirty dishes in the sink, clean ones in the dishwasher, and stuff that needs to be taken out to the recycling bins. I guess overall that's not too bad.

I'm trying not to ask myself, "how long will this flare last?" and just focus on resting so that it will hopefully be over quicker than normal. I still want to take the kids to OMSI and/or the zoo...or the coast...or someplace for cryin' out loud. No more weekends spent hanging out here. It's time to get out and see some of our favorite haunts and some new ones.

Second thoughts

Tonight there is a support group meeting for Alpha-1 folks at OHSU. Usually Dr. B is there, or his NP, and sometimes (like tonight) a guest speaker comes. I was informed of this get-together by an Alpha-1 coordinator and told that I should go. At first I was all excited! I thought that this would be a great way to meet not only other A1AD people, but also Dr. B or Lynn and maybe get in to see him sooner because of this. I planned to write up a small list of questions and ask the most pertinent ones as well. I wanted Ryan to go w/me but I knew that was not going to happen given there's no one to watch the kiddos. As the days drew closer I started to get nervous. Not only would I have to find my way to OHSU again, and figure out where the meeting location was, but I was going to be in a room full (?) of A1AD patients who are most likely having severe lung issues. They may or may not be SZ's, ZZ's, Null/Null, and/or on O2, in need of a lung transplant, or already had a lung transplant. That doesn't bother me. What does bother me, and thus has made me severely hesitant to go, is my current phenotype status. Being an MZ can bring skepticism from some. Many doctors still think a person w/the MZ phenotype cannot have lung or liver issues. Unfortunately that is not the case. There are many, many MZ's out there who have already had transplants, are on the waiting list, or are just starting their journey. However, due to some attitudes in the medical profession this has leaked over into the patient area. I recently was "friended" on MySpace by a seemingly nice mom whose young daughter is having liver issues due to A1AD. We had a couple of back and forth emails about liver problems and the question as to what phenotype I was come up. So I answered her. She responded with, "Oh, you're only an MZ?"--and then I never heard from her again. I'm guessing somewhere along the way she has heard that MZ's are ONLY carriers and NEVER get sick. Or maybe she thought she responded to the email but didn't. Funny how having something so small as one normal gene can change an entire perspective.

So here I am having all but completely talked myself out of going and yet wishing I'd just get the nerve up to go anyways. If I knew for a fact that I had lung issues related to A1AD there would be no hesitation. I'd go. But right now I just have symptoms of the disease and an MZ phenotype. Part of me feels like I would almost be intruding into this support group w/out a firm diagnosis. The other part of me says that's silly and maybe I'd meet some really great people and learn a lot. I still have time to decide. The meeting is at 7 p.m. I'll update later as to if I go or not.

Putting it into perspective

Let's be honest here. When I started this blog I never meant for anyone I knew to find it, let alone read it. Oh sure I knew strangers might stumble across it, yet I also figured that if they did it would be because they had typed something into their search engine that brought them to my site to begin with. Ergo it was quite possible that 1.) the things I am blogging about might actually inform them of something they may be struggling with, and/or 2.) may make said person realize they are not alone in whatever hidden illness battle they might be waging. But as time went by I had a few people wanting updates on me and given one of my friends had already found this blog (hey Beth, my fellow yarn hoor--what up?!!), I thought it couldn't hurt to share it with a select few. Now, I can count on one hand the number of people I've let into this inner circle of mine. Each time I give out the link to this blog I always feel a bit hesitant. This is a place that I consider very private. I am not one to bitch about my health as incessantly as I do here, especially not to my friends, but this is my one outlet to do so. Of course, if my friends ask me questions I will answer them, however I often don't get into a lot of detail and/or let them know what it's really like. There's no reason for this except that I don't want to bore anyone with the gory details nor make it seem like these illnesses are my life. Because they aren't. I have no qualms sharing with anyone certain aspects of what I have. To me, knowledge is power. By sharing I am potentially helping someone figure out why their ALT's and AST's are high. Or that lung problem that seems to run in their family? Maybe that's A1AD. The bone pain they're dealing with? I get it...I deal w/it too. So why would I not want everyone to know about this blog? Simple. I get that I come across here as if A1AD and arthritis are my LIFE. My ONLY life. And that couldn't be further from the truth. Yes, I have focused on it a lot (i.e. this blog) by researching, reading, seeing specialists, and going through the motions. Yet I am many other things than just a person with hidden illnesses. I am a wife. A mother. A dog owner. A friend. A knitter. A photographer. A website designer. A coffee lover. A cook. A lover of movies. A book reader. A writer. And the list can go on and on. I have three other blogs in addition to this one. I have a knitting blog, a photography blog, and my blog on my MySpace page. Each one shows a different facet of my life and yet none of them define who I truly am.

People who know me understand this. They know that while I may talk about my problems when they ask how things are going, that I am not all consumed by it. It is not who I am. It's just a part of who I am. Just as the other things I listed above make up the person that is me--A1AD, G6PD, Arthritis, etc. are all just pieces that help form a whole. The illnesses are nothing I can get rid of. Nothing I can ignore. Nothing I can truly change no matter what I do. They just simply...are. Believe me, I've tried. And at times I still try. I would love nothing more than to go back to my days of no pain, no bone crushing fatigue, no worrying about when my liver or lungs are going to fail me completely, no drugs, no nothing but good health. I can't count how many times I have pushed myself pretending to be something I no longer am and paid for it dearly. Yet I will always be that person. I will always do everything within my power to lead as normal of a life as I can. But with this I have learned that I can't do it all. That is not a bad thing. I have also learned that I have to prioritize my life. Again, this is good. As much as I loved my wedding & event decorating company when I bought it, I started to resent it towards the end. Working as hard as I did had serious consequences on my body and I had to admit this to myself, and let it go. We could've kept the business. We could've kept on, me pushing myself, Ryan and my dad working two jobs, the kids losing out on weekends, but we certainly COULD have kept doing it. I just didn't want to. And there was no point to it. So I let it go. I prioritized my life and put my family and my health first. These illnesses forced me to do it. There was no sticking my head in the sand and pretending they didn't exist. My body refused to allow that to happen. Instead of fighting it I decided to listen. That is not always easy. Not when listening means accepting that your life will never again be the way it was. Yet I have been here before. When I got pregnant...when I had my son...when I got married...when we had our daughter...moved to Oregon...and so forth. Each time my life changed, sometimes dramatically, and each change had it's own challenges and rewards. With them I grew wiser, stronger, and learned a lot. As crazy as it sounds, what I have gone through over the past two years has taught me quite a bit. It's forced me to be more patient, to be more understanding, and to take better care of myself. Conversely it has also taken away certain parts of myself that I loved, albeit took for granted, and made my question how I can continue to go through life in the shape I'm in now. It has made me feel alone. Very alone. Writing about it here as given me an outlet to get all the things I keep from people on the outside world out of my inner bottle. This blog allows me to look back and recall what symptoms I've had, when my last flare up was, if there is any common thread between flares, what drugs I've been on, and anything else that deals with the craziness that is my life. I do not share a lot of other things that go on in my life simply because I have never felt that this was the blog to do so in. Nor have I talked a lot about my health issues on my other blogs. It may come up at times, in small amounts, but to me my other blogs serve a different purpose. At times they cross, as is a given, yet each one serves it's created intention--for me to share whatever the blog is about with other people.

Last night I did the finger stick test for the Alpha-1 Phenotype test. Part of the paperwork had a long questionnaire regarding your feelings about health, tests, and whatnot. One of the questions had to do with preferring to know if you have this deficiency vs. not knowing. I, of course, prefer to know. It gives me a sense of control in an otherwise uncontrolled situation. I can learn about it, find doctors that actually know about it, and possibly prolong my liver and lungs longer than I could if I didn't know about it. By acknowledging it I am also agreeing to get in the drivers seat and take over. Sometimes I will be in the passenger seat...going along for the ride...but sometimes I'll be taking the lead and taking steps to better my health. Would I love to go along for the rest of my life and deny that I have A1AD or arthritis or any of my other weird disorders? Of course I would! Especially if it worked. Unfortunately it doesn't. So I will continue to share my journey and what I learn along the way on here despite my misgivings and thoughts of completely deleting this entire blog for fear of giving the wrong impression that I am allowing these things to control my life. The last thing I want readers to think is that I sit around all day and night feeling sorry for myself, not living my life, and ONLY thinking about my health. That couldn't be further from the truth. Despite being in constant pain and having a black cloud above my head (i.e. the fear that my liver will conk out at any given time), I am doing my best to keep pushing, keep battling, and enjoying what I have around me. I have good days and I have bad days. And although I talk about not much else than my health on this blog, rest assured that I am doing so for a reason! ;o)

Add seasoning, stir, and simmer

In my never-ending quest to find relief for my pain, I picked up some sea salts with special herbs for muscle/joint pain when we were grocery shopping this week. Yes, I was skeptical too and after reading the label I realized that most of the stuff in the package (the $5.95 package) was in my pantry. Except Dead Sea Salts. I bet I could get some, though. But whatever...I love the new bathtub and will use any excuse to get in there and soak. Not that I need an excuse, mind you.

Yesterday was a particularly grueling day for me. I'm not sure what the deal was but my pelvis felt as if it were ready to break in half. I was literally crying and/or fighting back tears from the afternoon on as the pain was constant and no position brought relief. Sometimes it would let up a bit yet it always came back. Up until then I had been doing fine. Sure my bones were more achy than usual however I can deal with that. When my SI joints flare up it can be excruciating to say the least. I wonder if the cortisone is wearing off or something? Who knows. So after taking a half and a whole Percocet in about a 3 hr. time span and still having a ton of pain, I figured I'd try the Dead Sea Salt soak for the hell of it. The kids were watching cartoons, Ryan wasn't home yet, and the dogs were conked out as usual. I crept downstairs, drew the water, lit some candles, poured the contents of the package into the included sack per the directions, then placed it into the tub. Little bits of thyme and who knows what else floated out here and there. The salts dissolved through the bag and as I sat in the tub I felt sort of like a chicken. Steam was rising not only off of the water itself, but also off of my hands, arms, or whatever else I pulled out of the super hot water. It was very warm, I was seasoned up good, now all I needed were some cannibals dancing around me, singing, and waiting for me to read 185 degrees when poked with a thermometer. The directions read that I had to sit in there for 30 mins. Normally this wouldn't even be an issue for me. Last night, however, I ran the water a tad too warm as I didn't want to get cold while soaking, so I was quite toasty. I even opened up two windows to get some cool air in. In the end I managed to withstand the piping hot water for the allotted time but unfortunately it didn't provide much relief. Maybe it would have had I not been in as much pain as I was. I ended up taking yet another whole Percocet later that night just to make it through until bedtime.

Today I do feel better but I'm still hurting really bad. Not make-me-cry bad, though. Just enough to make me kinda hate life right now and keep me from working on the website that I need to get done. Sitting at my computer is tough at the moment. Even with a fairly comfy chair. I need a butt pillow. A really good butt pillow that will support my pelvis. There has to be one of those out there. Off to hunt for one...

NASH

Last Wed. I made the trek across the river to OHSU's G.I. clinic. The building itself was quite large and a little strange to maneuver around. I had already gotten lost along the way and was flustered, but the cherry on top was when I went to check in and got the, "Didn't they call you?" greeting. Turns out Dr. Z had a family emergency and they had tried to call me. They didn't have my new home number however they did have my cell phone and I never received a call on that. Luckily they had set me up to see another doctor. I filled out a form, got called back, weighed, vitals taken, and then waited patiently. Dr. N came in and greeted me warmly. He had already looked over my chart--not sure what info they all had on me--but needed the results of my liver biopsy. Gotta love my bigass binder of medical paperwork. I pulled it out, let him read it, he nodded, and handed it back to me. I was asked what my main concern was for the day. This was a first! I told him that I was obviously concerned about my liver issues and wanted to know what he thought was causing it. He, too, does not think I have Alpha-1 Liver disease and said he's never run across an MZ patient that was seriously ill. Now I "know" of some MZ's who have already had a transplant or are waiting for one and informed him of such. He seemed surprised and said he'd love to actually talk to him--I guess from a research stand point it interested him. Still, Dr. N guessed that these MZ's who've had serious liver disease actually had underlying, undiagnosed liver issues (such as NASH) and that when their doctor couldn't figure out the cause of the inflamed liver, saw the low levels of Alpha-1, and hence made the diagnosis of A1AD liver disease. Not so sure that's the case, honestly. Especially not after "talking" to them this weekend. I should say that he did state on more the one occasion that he could be wrong which was good to hear. Better that then, "No way it could ever be this!!" Dr. N says he believes I have NASH - Non-Alcoholic Steatohepatitis. When compared to A1AD liver disease there are some similarities such as not being able to stop the progression of the disease and not knowing how bad your liver will get. In people such as myself (i.e. not overweight, not a drinker, and not diabetic) they are wondering if it isn't a genetic condition like A1AD. There is also a chance I could develop diabetes given I most likely have insulin resistance (or so says Dr. N). In reading more about that condition it does coincide w/my hypoglycemia problems. I don't think my insulin levels have ever been checked so no way to know for sure at this point. I was told that so long as I stay on a fairly healthy diet I will most likely not develop diabetes. Of course there's no way to know for sure. :o/

For now the approach is for me to have blood tests at least twice a year. Dr. N said he could almost guarantee me that my AST's and ALT's would go back up. Apparently that is the M.O. of NASH. The levels wax and wane but aren't always indicative of damage being done. On the contrary, actually--which is really frightening--but they are seeing patients who have never had raised liver enzymes end up needing transplants from this disease. Definitely a "silent liver killer." I'll be seen at least once a year, maybe more often, and be watched. I was given an article about the correlation between MZ Alphas and the effect it has on folks w/NASH and Hep C. It seems that being just an MZ worsens the NASH or Hep C. Double whammy!

We discussed a few other things, things that either are no biggy and/or I can't recall at this present time. If I remember them and they seem pertinent then I'll add them later. For now the new diagnosis brings my total of crazy ass things that are wrong with me (and actually diagnosed) to: SIX. Go me.

Lung wise I've been a lot more wheezy, short of breath, and feeling run down. I thought for sure I was coming down w/a head cold given my symptoms but either it was the shortest head cold ever, or it's something else. I do know that the previous owners of the house we're in had cats, so that could be aggravating things as I'm very allergic to cats. Or it could just be me adjusting to the wet/damp/moldiness that is Portland. I have a tentative appt. w/Dr. B (pulmo at OHSU) scheduled for Feb. '08. Crappy. I may get moved up after I send him my Alpha-1 stuff, chest xray, and breathing test from forever ago. I also plan to write him a letter and let him know how bad things have gotten. Definitely not horrendous or anything, but I'm not liking how I'm feeling. Dr. N seems to think that w/an Alpha-1 level of 71 that I should be just fine. Once again I was told that this is quite low for an MZ. Maybe I'm actually an SZ. Need to do that damn finger prick phenotype test for the love of gawd!! Hopefully I can get in sooner and update once that happens.

Arthritis has taken on a whole new meaning in this type of weather. Luckily it has been wonderful here!! I keep waiting for that to change, the sun to go away, the gray to roll in, the rain to come, and to feel the true meaning of living west of the Cascades. And yet I've been in more pain despite the mild days. Achy bones for sure!

Head splitting open/fullness thing has gotten better from the last time I blogged, but it's still there. Seems that as soon as I start to think it's gone I do something that requires quite a bit of physical effort and bam...it's back. The fact that it does seem to be happening less is hopeful.

On a more happier note, we are loving it thus far in Portland! We do miss our friends and my dad, but overall I think we made the right decision. The kids are adjusting well at school, Ryan likes his job (even though he's only been there for two days), and I'm learning how to get around our little neck of the woods. Lexi and Kya are handling the stairs much better than we thought they would. Kya isn't impressed by having the office as their "bedroom" instead of sleeping in crates. Weirdo. Lexi loves it, but they both wake us up at night when they move around a lot as the office is right above our bedroom. We have discovered the wonders of Ikea and are hooked now. Bought brand new bedroom furniture for our bedroom and both the kiddos' rooms. Soooo cheap and yet it's heavy, feels expensive, and looks great! I think it will take Ryan at least a year to recover from putting it all together, though. ;o) It's been hard not to eat out every night w/all the restaurants to choose from. I can't say that we've had crappy food yet (knock on wood). I can't wait to show those of you planning a visit out/up here all around our favorite haunts! For now...it's late...I'm exhausted and off to bed!

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.

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.

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.

We are family?

Given the genetic nature of Alpha-1 Antitrypsin Deficiency, I figured it would be wise to let my mom's side of the family know about it so that they could get tested if they so desired. The thing is, I haven't spoken to my mother in almost 3 yrs. Because of this, her sisters--my aunts--are not my biggest fans. A couple of them still talk to me (as in if I called one of them they wouldn't hang up on me, but we're not chatting or anything), send me Christmas cards, and stay pretty neutral. Two others (and three of my cousins) think I am one of the worst human beings on the planet. Now, I get that they have only heard my mom's side of the story and I'm sure it's dramatic and fraught with lies and how I'm just "killing" her. Thing is, all through my childhood she made it well known to me that I was in her way of being happy. If it wasn't for me she could find a good man--all the ones she dated (and two of the ones she married) didn't like kids. She was verbally and physically abusive although it wasn't horrendous. I wasn't locked in a closet and forced to drink my own urine. It wasn't nice though. Still, I did everything I could to win her approval and make her happy. One day I finally realized that it didn't matter what I did...she would never be happy. Not for herself and definitely not for me. The woman reveled in making me feel like shit. I got tired of it. Knowing her demeanor and penchant for drama I knew that trying to explain this to her like a normal human being would only result in her flying off the deep end and lots of angry words being said. I had tried once before when she came out for a visit. She ended up staying at a motel the night before she left, instead of at my dad's where she had been staying, throwing a big fit, and telling my aunts how awful I was.

That's my mom. I don't expect her to change and that's okay. I would be lying if I said that I wasn't hurt by the fact that part of my family has chosen to disown me. Growing up I was always a good kid, took care of people, and loved my aunts. For some reason they were awesome moms. Not perfect I'm sure, but man they loved their kids and loved being a mom. I wanted that. So yeah, it sucks that I don't feel like I can call one of them up and ask for advice or even just to hear how they're doing. Again...it is what it is.

I put my feelings aside and emailed my aunts and cousins to let them know what I had. I told them that it was serious, that I would most likely be put on the liver transplant waiting list, and gave them links to places where they could read more and even request a free anonymous test.

My mom called my dad the following day. No one called me. Nor emailed me. So much for family. You'd think they could put aside their differences long enough to let me know they're thinking of me. That no matter what they love me, even if they disagree with my choices as an adult. I can't say that I'll update them. If they cared enough they would've let me know. Since they don't, cest la vie.

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.