I know I'm gonna leave stuff out

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.

Sometimes technology sucks

Lately I have this thing where I get a date in my head and it gets stuck. I convince myself that an appointment I have scheduled (for instance) is on "xyz" date...even when it isn't. I can't tell you how annoying this is. I did this with my appt. for Dr. B (the Alpha-1 pulmo). I was certain it was on Feb. 4th, but when his office called two weeks ago to request that I send them some more info, I asked when my appt. was just to be sure. Feb. 1st...8:40 a.m. Whew, good thing I asked! So I put it into my Thunderbird mail calendar thingamabob and added a reminder to it. Days passed, new stuff cropped up, and I slipped back into thinking the appt. was on the 4th. When I didn't get a reminder phone call for Fri. I thought nothing of it. Friday came and went (with a phone call from Dr. S...more on that later), Saturday was half over and I started questioning when I was supposed to see Dr. B. I pulled up the calendar and there was nothing listed for the 4th...or the 1st...or anywhere for that matter. Everything was GONE. I went into the living room and asked Ryan to check the calendar on the laptop and sure enough, there was nothing listed. After some checking it appeared as if a software glitch ate all of our entries, including my appointment w/Dr. B which was (obviously) on the 1st, not the 4th. I cried. I had been waiting for this appt. for over 4 months and because of a glitch, both from the computer and from the clinic not calling to remind me, I missed it. Don't get me wrong, I should have written it down as well. Lesson learned.

Today I called and explained what had happened. The receptionist was extremely kind and did her best. She got ahold of Dr. B and asked if he would come into the clinic for an extra appt., yet he wouldn't. He's also booked out until May. Yep...May. So I'll be waiting forever once again. I'm on the cancellation list just in case, although Dr. B is rarely in clinic so I doubt anyone else will be as stupid as me and not show up. Needless to say I am tattooing the date for this appt. on my forehead instead of trusting my computer. Sigh...

One good thing did take place on Fri., though. Dr. S called me back after I left another message for her and we went over the recent findings. She spoke with a bone specialist/radiologist (something like that) again regarding my SI joints. He told her that what I have is degenerative, not related to the cysts/lesions in my pelvis, maybe caused by childbirth (??), and that he wants to see my MRI from last year. I told her I'd have them send it up so he can look it over and we'll go from there I guess. Dr. S also put in an order for me to schedule an u/s for my liver, spleen, veins, et al--which I did today and will be going under the Doppler this Thurs. In addition to all of that I got a referral back to the gastro docs. I specifically requested NOT to see Dr. N again, however. When I called the gasto folks today to get scheduled they put me in w/Dr. Z who I was originally supposed to see way back when. But...like Dr. B, Dr. Z is a busy man. So busy in fact that his earliest appt. is in JUNE! Once again I was put on the cancellation list and the gal I spoke with said she would also speak to the doctor to see if he can get me in earlier. If not I'm seeing someone else. Both Dr. S and the doc I saw at the Immediate Care clinic were quite adamant I be seen a.s.a.p. The person I talked to said they hadn't received a referral from Dr. S yet, so maybe when she sends it that will speed things along. I'm also going to pick up my records from the Immediate Care place and send them on to Dr. Z so that he knows what's going on. Fingers crossed that I can see him by next week.

The pain on the left side (spleen) isn't as bad as it was the weekend before last, or maybe I'm getting used to it, but it's still pretty painful. My right side (liver) is really uncomfortable. I'm still battling the nausea and fatigue. Fatigue is better, nausea is too, yet they're there. I think I've lost weight, though...bonus!

Lung-wise my Peak Flow Meter readings are holding around 350-400. I'm no longer feeling the effects of the corticosteroids from the Advair, thankfully. I go back to Dr. J (the pulmo) in another week or so. More updates when that happens.

More petechiae have appeared on my arms and now on my legs. Dr. S was at a loss as to why they are showing up when my platelets are okay. Who knows with me! :o/ I'm just glad I didn't need a transfusion...knock on wood.

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.

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)

And the verdict is

As of now Dr. J thinks I have asthma. My lungs looked good on CT and there isn't any evidence of emphysema, but I did drop pretty quick during the methacholine challenge test. He has put me on Advair twice a day for the next three weeks at which time I will see him again. I took the first dose last night and a second this morning. Unfortunately Advair is a corticosteroid and we all know how much my body hates them. Today the lightning in my head and the shakiness came back from it's hiatus. But, I can take a deep breath again. And my peak flow meter hit 445--still below normal but up from my usual average of 400. I have yet to take the third dose tonight as the symptoms I am having are the "call your doctor" type. Tomorrow I will call Dr. J's office and find out if he wants me to keep taking it or what. Not sure what my other options will be as non-steroidal treatments aren't effective. :o(

Stupidly I put off asking for a percocet refill and now I am out. Of course today would be the day that my left SI joint has decided to scream at me. My skin in that area feels incredibly bruised too. Wearing jeans to the store tonight was so not fun. Honestly, the roxicet doesn't kick this pain. At least not the half of one I've taken. Maybe if I upped the dose it would which would be fine for the times that the pain gets this bad and then I can take it back down to the low dose I'm usually on. Or I'd be up for trying something completely new too. I've left two messages for my rheumy starting yesterday and no one has called me back. I need a family physician that can handle stuff like this. It's my fault for waiting this long, I know, it's just that I hate asking for pain meds. I really do. But damn I wish I would've called last week. The pain is bad this time. Real bad.

Passed? Failed?

The first Lung Function test I had was easy peasy. Basically I had to breathe into a plastic cylinder hooked up to a big machine several times, sometimes normal breathing, sometimes blowing out hard and fast, sometimes sealed in a chamber, sometimes sitting outside of it. There was no albuterol, nor other drugs to affect my breathing so I didn't have to worry about being turned into a shaking pile of Jell-O after the fact. The tech was very sweet. We chatted about kids, marriage, mothers, and everything in between. When the test was over it seemed like I didn't have COPD or emphysema--which is awesome--but I guess we'll see. I grabbed a salad from the hospital's cafe. And man, I hate eating alone. Like really abhor it. It's not so bad when I have something to read, but when I don't and I have to just sit there staring at my food, or the table, or the wall...well, I get lonely. So I inhaled the surprisingly tasty chicken and greens then found a comfy couch to hang out on and played my DS while I waited for my next appt. Yeah, I have a DS. A pink one. I played Sudoku...love that game.

Next up was the chest CT. Also took no time at all especially since I wasn't given any contrast.

The following week I went back for the Methacholine Challenge test. I still find it fascinating that they can introduce a chemical into your lungs that restricts the airways. Just crazy to me. We started off doing a baseline. I was below what I had been the week before and had noticed that I had felt tight in my chest that day--made sense. Then she gave me a dose of the methacholine. Re-checked my breathing, another dose, etc. and so forth. After the fourth dose and breathing check I was given albuterol to open me back up. Although it lifted the extra tightness and heaviness and allowed me to breathe easier, it still didn't make me feel like, "FINALLY...I can truly BREATHE again!!" Just brought me back to what I had been before we started the test. Bummer. I think I have reactive airway disease--asthma--but we'll see what the doc says tomorrow.

Thus far I have taken three doses of the mega Vitamin D and continue to feel some improvement, yet still having bone pain. I seem to be able to stave off taking the Roxicet until later in the afternoon, though. Although some days I wake up in pain and that's never fun. Grin and bear it, baby!

I'll report back after the visit w/Dr. J tomorrow. He did have my Alpha-1 levels and liver enzymes rechecked as well so we'll see what those show. As a side note I received the results from the MUSC study regarding my phenotype re-test. I am still an MZ with a level of 18 uM. My dad is an MM so looks like the Z gene came from my mom's side of the family. We are now going to have my husband tested to see what his A1 status is and then probably wait until the children are older before we have them tested. I'm sure Ryan is an MM which means the kids will either be MM or MZ. It would be really, really awesome if they were both MM. Truly.

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.

Next stop...lungs

After emailing Dr. B (the pulmo) back and forth a few times, it was decided that I should see Dr. J since Dr. B couldn't get me in until Feb. On New Years Eve I made the trek down south to Oregon City to meet the endearing Dr. J. Like my rheumy, Dr. J was very thorough...starting from when I was a small child and leading all the way up until present day, we went over all the weird things I have. At various points in the conversation, Dr. J had to stop and laugh as a new diagnosis was presented. I'll admit that it's quite overwhelming listing everything I have/have had. And amusing to a degree as well. I mean, come on, who the hell has all of this crap?! He asked several questions, did an exam, and ordered a CT scan of my chest along with a pulmonary function test. Depending on what those show I may have to come back and get a Methacholine Challenge test. In the meantime, I was given a Peak Flow Meter to measure my breathing in between all of this. The first day I used it the highest it went was 350. Yesterday I got it up to 410. Normal for someone my age and height is roughly 480.

My CT and lung function test is scheduled for the 10th of this month. The methacholine is on the 18th, I think. Or maybe that's my follow-up appt. I'm too tired to go get my reminder.

Other than not being able to take a deep breath, still being sore, and utterly exhausted, I'm hanging in there. I had a horrible bout of what we think was food poisoning the week before Christmas. That was one of the worst things I have ever gone through. Luckily no one else got sick, hence why we think it was food poisoning instead of something viral, but it took me about a week to feel even halfway normal. The odd thing is that I haven't gone back on the Questran and haven't needed to. I'm almost afraid to say that in case I jinx it. :o) My exertion headaches seem to be gone as well. I did get another bad one at the base of my skull yesterday so I may mention them to the pulmo when I see him since he seemed concerned about them.

New rheumy

My first visit with my new rheumatologist, Dr. S took place the day after Christmas. My dad was in town so he stayed with the kids while Ryan went with me. I figured the appt. would be a quick one and that we would be in and out in no time. I was apparently the first patient of the day and after having to change rooms due to the computer in the first one not wanting to cooperate, I had my blood pressure, pulse rate, and temperature taken. Dr. S came in shortly thereafter and greeted both of us warmly. From then we went through my history, some lab tests I had from Dr. B, and so forth. That part lasted about an hour. Truly shocking and amazing to me! I am so used to being rushed through an appt. that I was surprised to have a doctor spend so much time with me. She then gave me a thorough exam, spending lots of time on various spots as if she really was checking me out. Dr. S said I definitely have markers for Hypermobility Syndrome, yet she's not convinced I have Undifferentiated Spondyloarthropy. She also seems to think I might have Fibromyalgia, although when she examined my chest she noticed the same thing Dr. Beals did--I can't inhale or exhale well at all. If it is a lung issue than there is still a chance I have Fibromyalgia I guess. If it's a restrictive one then it goes back to Ankylosing Spondylitis as that would mean my ribcage was fusing/fused. But even with all of that she was concerned about my bone pain as Fibro doesn't cause that. She asked if anyone had ever checked me for a Vitamin D deficiency...they hadn't. We went over more things and she asked if she could make copies of all of my lab work that I had brought. Again, this impressed me because not only did she take the time to look at my "List of Symptoms" that I gave her without cringing, she wanted all information about me she could get her hands on. Felt very reassuring. At the end of our visit she wrote orders for lab tests, orders for low back xrays, and a prescription for Trazadone to see if it would help me get more rest and thus decrease my pain. Both of us agreed that rather than try to prescribe anything at that point it would be best to wait until the results of the labs and xrays were back and then go from there. She also saw no reason for me to get back on the Sulfasalazine since it hadn't brought much pain relief and had the chance of causing Hemolytic Anemia as well.

Ryan liked her, I liked her, and I felt good when I left her office. I don't know that I have Fibromyalgia...and obviously I was quite hesitant about that part given what Dr.'s A, B, and B have told me, not to mention how shitty Dr. N (the gastro) was about it all...but right now I'm just glad that she seemed open to me, treated me with kindness and compassion, and seems to want to get to the bottom of things for me so that she can help me feel better again. That's all I ask for in a doctor.

I had the blood drawn, did the xrays, and yesterday got a call from Dr. S about my results. Turns out I do have a Vitamin D deficiency and that may very well be what is causing the bone pain. I am trying not to be too hopeful about this being a "fix" for the pain, but it's hard not to be as it would make sense! That would be so wonderful if after starting the prescription Calcium that I get relief in at least that portion!! I read up on bone pain with a Vitamin D deficiency and often times people who have it do not respond to the typical pain relievers/killers--just like me. The Oxycodone takes the edge off of my pain but it never truly takes it away. Again, trying not to get overly hopeful and yet I am. :oD Dr. S also wants me to take a B12 vitamin as I was low on that, not below normal but right on the cusp, so I started 1 mg. a day yesterday. Unfortunately the pharmacy I go to closed early last night so I have to wait until tomorrow to pick up the high dose D. I will be on that for 8 weeks, then I will start a Calcium supplement from here on out. It sounds so easy doesn't it?! Weeeeeee!

X-Ray-wise the lesions/cysts in my pelvic bones haven't changed, my spine looks good, but...the radiologist forgot to check out the SI joints. Happens almost every time. Given the large "holes" in my ilium, the radiologists get very excited and seem to forget everything else. Even Dr. S agreed with me that it seemed to be the case. We couldn't blame them as they are truly "weird" and very, very rare. So, she is going to have the bone radiologist re-examine the views to see what he thinks about my SI joints and get back to me sometime next week. Overall I am pleased with her thus far and am optimistic that she will be a great ally in my care.

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.