When it rains it pours...

So true that statement is. Where to start? Lungs...we'll hit that first. I stopped the Advair and spoke with Dr. J's nurse and she said to stay off of the Advair, continue with the Peak Flow tracking, and Dr. J would go over things at my next visit. I have been told Spiriva might be a good option for me so I'll ask about it when I see Dr. J.

Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.

Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.

I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.

Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.

Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)

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)

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!

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.