When I get busy and forget to blog I might as well just start over with the next doctor's appointments as it is a given I will not remember most...or half...of what has happened. Nature of the beast I guess. But let's see...here is what I DO remember:
I had my abdominal u/s and my spleen was back to normal. I guess when they wait almost 3 weeks that's what happens. Of course I'm relieved as this means that the spleen is one less thing I have to worry about...for now. My liver is still inflamed and fatty, although I do not know if it was worse or the same. The MA, who was the one that told me my results, didn't seem to know either. I was put on to 2000 mgs. a day of Salsalate. Salsalate is an NSAID. NSAID's and I do not get along. My rheumy took me off the Percocet and prescribed Vicoden in hopes of controlling the pain (if the Salsalate didn't work) with less Tylenol to bug my liver. However, I gotta wonder how 2000 mgs. of Ibuprofen, which is way worse for your liver, is better than 325 mgs. of Tylenol?! I have to take partial "blame" in that I told Dr. S I wanted to get off of the painkillers if at all possible. So I think she's trying to accomplish that for me. But at this point I'm now re-thinking this given the toxicity is higher with the NSAID's and they kill my stomach. The crap part of it all is that I NEED something that is anti-inflammatory to see if that will reduce the pain. Yet if I can't take it what's a girl to do? My stomach has been quite sore/tender for over a week now and I did take the Salsalate for one day (big whoop, right?) but stopped when I found out it was an NSAID. For now I'm trying to "heal" my stomach and then give it a shot.
But weirdness...when I talked to the MA about my abdominal u/s results I asked if Dr. S wanted me to schedule a follow-up appt. for my bone/joint issues. The MA checked Dr. S's notes and said, "Nope. Unless you have the red, swollen joints again." Uhhh...okay. So like no follow-up appt. ever? My dad was extremely bothered by this given the fact that Dr. S has prescribed me medicine, and as such is treating me, yet isn't going to see how things are going. Hell, even Dr. B (the rheumy from Bend) scheduled me in every 4-6 wks. I'm not sure what to think of it. I like Dr. S, thought she was thorough, was impressed she found the low levels of Vitamin D, and now this. I think I suck at picking doctors. :o/ We'll see what, if anything, happens after I have my Vitamin D levels rechecked sometime next week as this Thurs. is my last dose of the mega D.
Moving along to the next "issue." I had my follow-up appt. w/Dr. J the pulmo. I've been put onto Singulair and Intal (when it comes in...the pharmacy had to order it). Gotta keep up with the PFM readings to see if these meds work. I've taken two doses of the Singulair and haven't noticed any effect, but it's not a steroid so I'm guessing it's going to take awhile. The upside is that I'm not feeling like crap because of it. I am, however, battling a head cold that's been going around everywhere so who knows. :oD
And finishing up with...the appointment w/the Hepatologist, Dr Z. What I hadn't had a chance to blog about was that the clinic where Dr. Z is at said I needed to see Dr. N, as he is who I originally saw. Of course I was completely against that and told them that I would just go to another clinic. I called a place that had several doctors who had been recommended in a recent magazine and started the process to get in to see one of the Hepatologists. But then a scheduler at Dr. Z's office came through. She had fought hard to get me in and the clinic coordinator finally agreed to let me see Dr. Z. Personally, I think it's shitty and incredibly stupid that this was even an issue to begin with. I could see if I wanted to switch docs just for the hell of it...I guess...yet I had a valid reason for not wanting to see Dr. N again. I told them he had brushed me off and made me feel stupid. Why on Earth would I want to be seen by him again? And why couldn't I see another doctor, let alone the doctor I was originally scheduled to be seen by anyways? /End rant. So thank you, Janelle (I think her name is), for fighting the good fight for me, a person you've never met but felt compelled to help. My appt. with Dr. Z isn't until April although I'm on the cancellation list for him as well. Good news is that because my spleen is okay right now I can wait to be seen. I will say that my liver has been torturous to me lately. Lots of pain, bile diarrhea, and nausea. My right side still hurts every now and then and radiates to my back and down towards my hip. Curious to see what Dr. Z has to say about it.
Wow...maybe I didn't forget anything! But then how would I know, right? ;o) This weekend some friends of ours and their kiddos came up to visit us. Their kids just so happen to be the best friends of our kids. Clear as mud? Anyways, Ryan and I offered to keep Colton, Makaila, Rachelle, and Hayley overnight so that Tiffani and David could have a night off and our kids could catch up on some much needed friend time. Although the constant running up and down the stairs and extra work took a heavy toll on me (I'm still incredibly sore and worn out), it was soooo worth it! The kids loved every minute of it and it was nice to have the house filled with craziness for a bit. They are all really good kids, and despite a bit of mischief from the girls, everyone got a long well and hated to say goodbye. I had every intention of sleeping most of the day today but alas, our TV needs to be looked at again (they've already cleaned it, replaced the light engine twice, and it's messed up once more) so I was awoken at 8:30 by the repairman calling to let me know he'd be here between 1 p.m. - 4 p.m. The kids are off school yet have been total dolls today! Thank God! lol Maybe I'll sleep all day tomorrow.
Or not.
Showing posts with label Life. Show all posts
Showing posts with label Life. Show all posts
Monday, February 18, 2008
Thursday, January 31, 2008
Still waiting
I left a message for Dr. S's MA on Monday morning and heard nothing. Tuesday passed without a phone call as well. I slept quite a bit both days, yet not as much as I had on Saturday and Sunday. Yesterday I had pulled up the OHSU website and was about to call the rheumatology department at 3:30'ish p.m. when the phone rang. It was Dr. S's MA wanting to know what all was going on. I filled her in, she told me she would pass it on to Dr. S, and we hung up. Later she called back for more info and again assured me that all of this would be on Dr. S's desk. I didn't hear anything last night, not that I thought I would.
I'm assuming that Dr. S is looking into everything and even talking with colleagues to see where I should go next. I do like her...I just wish the MA communicated more. Anyways, I will update when I have more information to update with. For now I am still upright and the pain isn't nearly as bad as this past weekend, although it is still there, and the nausea is hit or miss.
I'm assuming that Dr. S is looking into everything and even talking with colleagues to see where I should go next. I do like her...I just wish the MA communicated more. Anyways, I will update when I have more information to update with. For now I am still upright and the pain isn't nearly as bad as this past weekend, although it is still there, and the nausea is hit or miss.
Wednesday, January 9, 2008
All kinds of fun tomorrow
Starting at 10 a.m. (more like 9:40 a.m. for check-in) I will be spending most of my day at Willamette Falls Hospital. First up will be my Lung Function test--unless I hit the lab before that and have my blood drawn. Then it's off to Radiology for a CT scan of my chest, sans contrast. The entire process should take about 3 hours. The drive there is roughly 20 mins. but it's easy as it's straight down 205 and then a few turns after you reach Oregon City.
I started my 50,000 units of calcium last Thurs. Tomorrow I will take my second dose. So far I haven't noticed any drop in the bone pain, yet I'm remaining optimistic that after my second or third dose I will notice an improvement. I also began the B12 supplementation and am way less anxious than I used to be. This was a surprise side effect that I am thrilled about! I wish I would've known sooner about my B12 level being somewhat low so that I didn't have to suffer like I did. It wasn't anything major, however I was starting to hate going too far from home. I can't tell you how nice it is to feel "normal" and not stress over something as silly as running to the store. At least now I know those anxious feelings were not all in my head.
Fatigue-wise I hit the wall again a few days ago. Before it happened I had horrid nausea one night. So bad that I was convinced I would be sleeping in the bathroom again. The next day I woke up feeling as if I had a bad hangover, without the headache, and could barely function. Today I feel much better, although "much better" for me is still not good. :o/ Tonight Megan and I actually ran to the mall so we could each get a pair of Crocs. I had been coveting the Alice version but then I tried them on, and while I liked them (they are so cute!), I wasn't thrilled with how it fit around the sides of my foot. Nevertheless I asked the gal helping us to order me a pair as I figured I'd grow to love them. Megan, on the other hand, fell in love with the Alice in red. Then she spotted a fox Jibbitz (the little charm things you punch through the holes in the shoe). Naturally we had to get two RED foxes. :o) She was thrilled. While Megan had been trying on her shoes I saw the Celeste Croc and thought they were pretty stinkin' cute too. Tried on a pair and yeah...heaven. Of course they didn't have my size in the color I wanted, so the gal took my number and promised to call when they came in. Before we left I thought I'd check another store that carries Croc's and lo and behold, there at a tiptoe's reach was a size 7, Chocolate brown, Celeste. Sweet roll! I wore them around the house when we got home and though it was nice, my feet were already yelling at me from walking around the mall so it wasn't quite as wonderful as I thought/hope it will be. I am still on the search for the most comfortable shoes around. I've tried so many and none have fit the bill. Maybe, just maybe I've found THE ones.
I started my 50,000 units of calcium last Thurs. Tomorrow I will take my second dose. So far I haven't noticed any drop in the bone pain, yet I'm remaining optimistic that after my second or third dose I will notice an improvement. I also began the B12 supplementation and am way less anxious than I used to be. This was a surprise side effect that I am thrilled about! I wish I would've known sooner about my B12 level being somewhat low so that I didn't have to suffer like I did. It wasn't anything major, however I was starting to hate going too far from home. I can't tell you how nice it is to feel "normal" and not stress over something as silly as running to the store. At least now I know those anxious feelings were not all in my head.
Fatigue-wise I hit the wall again a few days ago. Before it happened I had horrid nausea one night. So bad that I was convinced I would be sleeping in the bathroom again. The next day I woke up feeling as if I had a bad hangover, without the headache, and could barely function. Today I feel much better, although "much better" for me is still not good. :o/ Tonight Megan and I actually ran to the mall so we could each get a pair of Crocs. I had been coveting the Alice version but then I tried them on, and while I liked them (they are so cute!), I wasn't thrilled with how it fit around the sides of my foot. Nevertheless I asked the gal helping us to order me a pair as I figured I'd grow to love them. Megan, on the other hand, fell in love with the Alice in red. Then she spotted a fox Jibbitz (the little charm things you punch through the holes in the shoe). Naturally we had to get two RED foxes. :o) She was thrilled. While Megan had been trying on her shoes I saw the Celeste Croc and thought they were pretty stinkin' cute too. Tried on a pair and yeah...heaven. Of course they didn't have my size in the color I wanted, so the gal took my number and promised to call when they came in. Before we left I thought I'd check another store that carries Croc's and lo and behold, there at a tiptoe's reach was a size 7, Chocolate brown, Celeste. Sweet roll! I wore them around the house when we got home and though it was nice, my feet were already yelling at me from walking around the mall so it wasn't quite as wonderful as I thought/hope it will be. I am still on the search for the most comfortable shoes around. I've tried so many and none have fit the bill. Maybe, just maybe I've found THE ones.
Wednesday, November 14, 2007
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.
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.
Monday, November 12, 2007
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)
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)
Sunday, November 4, 2007
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!
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!
Friday, October 5, 2007
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!
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!
Monday, August 13, 2007
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.
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.
Sunday, August 12, 2007
Breathing easier
Sort of anyways. The pain has gotten so much better. Last night I was able to take away the small pillow I had to tuck underneath my liver/side and actually sleep. I can't wait to get rid of the second pillow under "my" pillow. Not a big pillow fan. I also drove some today and only had a slight twinge when I turned around to look behind me as I was backing out of a parking space. I've had to continue taking the Percocet as my legs have been killing me again. Writing a mental not to myself to actually call my rheumy tomorrow and let them know that I stopped the Sulfasalazine and haven't been able to start it back up again. Let's see if I remember.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
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