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.

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!

Day 2/3 after the shots

I am still having quite a bit of alternating pain in the SI joints. Sometimes it's the left one, pinching/burning, and other times it's the right. Either way I'm still quite uncomfortable. Nothing that throws up a red flag and says "get thee to thy doctor right away" mind you. There is no redness or swelling so I'm assuming it's just the after-effects of having needles inserted into inflamed joints. I did read tonight that it can take 5-7 days before the shot kicks in and I've read even longer. I will say that tentatively I've noticed my legs have not been nearly as achy. Course that may change as the stabbing pain in my pelvis that I'm focusing on goes away. ;o)

My feet/ankles have been swelling a bit. The other night my right foot was pretty big. Like a troll foot. Or what I imagine a troll foot would look like. I got it...Hobbit! Hobbit foot! Something new...and hopefully something that doesn't last.

I started back on the Sulfasalazine last night. I am slated to see Dr. B on Mon. of next week so I figured it was best to start it back up again. Still having pain in my liver, enough that it's gotten my attention again. If I have enough energy I plan to head down to St. Charles and do the blood draw tomorrow. I wanted to do it today but that was not happening. Between being super sore and tired I opted to stay home and catch up on a few things that needed to be done around here. I did take it easy, yet accomplished quite a bit for the pain/fatigue level I'm in!

Speaking of which, the fatigue does seem a tad bit better. Would be nice if the fog and tiredness went away to the point that I could clean, run errands, and have fun again!

My TMJ has been acting up. I think it's from the weather...or maybe I'm clenching my teeth at night. I ate a chewy bar today and it felt like I had been gnawing on leather for four hours straight. Achy and stiff. Should've had him inject some steroids into my jaw. Talk about ouch! Could be worth it, though.

Back on the Sulfa...sort of

I actually called Dr. B (go me!) and told them that I was in quite a bit of pain, so they told me to get back on the Sulfasalazine (henceforth known as Zine), only this time I was to start taking two a day and then work up to the higher dosage. I went ahead and took a pill that evening and started doing the twice a day deal until Friday when I got that nasty headache on the right side of my head again. I wasn't sure if it was the Zine or if this is some other craptastical thing I have to look forward to from here on out. I can kick it w/one Advil...the problem is that I am scheduled for the SI joint injections on Tues. the 18th and am not supposed to take any ibuprofen or aspirin from Thurs. on. Of course after being in horrendous headache hell for over 5 hrs., I broke down and took an Advil. However, w/not knowing what's causing these I decided to stop the Zine until after the injections when I am allowed to take ibuprofen again. The other sucky think about Zine is that it takes anywhere from 1-3 months before any relief is felt. That's a long ass time to wait when you're in pain but it's damn near impossible when all you want to do is lay down and die.

And ladies and gentlemen, that's how I felt today. This weekend we had 4 events and a helluva lotta stress. We have hopefully found a buyer for our business but she may end up changing her mind and that just compounds all the crap I'm under. I know I overdid it these past couple of days, yet I have a hard time slowing down. Today I thought I would be able to relax and recoup but thanks to a caretaker pulling down the ceiling we had hung for a wedding on Sat. and left up for the wedding on Sun., that was not to be. Instead my dad and I had to beat feet down there, check the stuff, and re-hang it. So once again my body was pushed despite my dad being the awesome dad that he is and hanging the ceiling. I always help, though, so it was up and down the ladder, handing stuff to him, etc. and so forth. Next we hit Broken Top to pick up some rental items, then I headed to Fred Meyer's for some grub as I hadn't eaten at all, and by the time I got home I was in trouble. I took half a Percocet and tried to chill. Unfortunately it didn't work. No matter what position I laid in my bones were screaming at me. I don't know if it was the fatigue, the pain, the culmination of the stress from this weekend, or what but I gave in and cried. Then I took a whole Percocet and after awhile the pain had gone back down to the typical 4 or so.

I have decided that if after having the injections I am still having this much bone pain (which I probably will since the two are essentially unrelated), that I'll be calling Dr. B back and doing my best to get it through his head that when the pain is this bad I can't wait months for relief. For now I'm just hoping that the SI injections are fairly painless and that they work...and that the aching bones subsides soon.

A step in the right direction

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

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

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

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

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

Interesting development

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

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

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

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.

For the love of...

I put off upping the Sulfasalazine for a couple of days and ended up with a sore throat. This was listed as one of the "stop taking immediately" side effects, so I did. Then we went out of town and I didn't have a chance to ask my doctor about it. Why haven't I called him yet despite coming back on Sunday? Because that would make sense and we all know how I can't have anything make sense. I guess part of it is because I was busy catching up on work and the other part was that I figure that since I haven't keeled over that it's probably nothing. Still, I will be calling there tomorrow as I would like to go back on it if possible. I wouldn't be surprised if the sore throat is from reflux. I did the 14-day regimen of Prilosec and it worked well. Coincidentally (or not) after finishing the recommended amount, a few days later (about the same time I was due to up my dosage of the Sulfasalazine) I got the sore throat. So maybe it is reflux and not med side effects. Of course the crap part of all of this is that if it is reflux then that means I am screwed in that dept. thanks to the NSAID's and Pred. Just one more pill to take for a long time I guess.

I also rescheduled my liver biopsy to Aug. 9th at 11 a.m. Given that we have 3 events this weekend I figured it would be better to not be recovering from a hole being punched in my liver. Wise decision on my part as I have been swamped and stressed.

Leg-wise I have still been very achy and grudgingly taking the Percocet. I would really, really, really like to wean off of these as I do worry about becoming addicted. Regardless of whether or not I need them now doesn't matter. I don't like it and they freak me the hell out.

Hannibal Oliver (Hannibal from Dr. Lecter since he liked liver so much, Oliver from a gal who named "it" on the internets for me) is growing nicely. Not too fast, yet enough to make me shake my head and groan when I look down. When DH and I were up in Portland this past weekend we passed by a maternity store and I was THIS close to going in. The only thing that stopped me was knowing full well that anything with the word "maternity" on it automatically price jumps by about 100%. Boooooooo. For now I'll stick with my new flowy-bottom tops that I adore and curse at my snug (re: normal) t-shirts. I tell ya, I used to think I had a belly that needed toning and would lament that I looked pregnant when I wore sweatpants. Excuse me while I go smack myself upside the head. Plus, nothing is worse than seeing your belly enlarge and your boobs stay the same size. At least if they got bigger I'd be proportionate but NO...can't have that now can we? Eh, fiddlesticks.

And yes, even though I know you don't have to ask, I'm still exhausted. That part hasn't changed.

Still kickin'

Today will be the first day I up the Sulfasalazine from one a day to two a day. I'm hoping I see better results soon as I'm about half to 3/4 of the way through my Percocet and I don't know if my ortho will give me anymore or not. And really, I'd LOVE to be off of them even if it is just one a day. Course as I say this I know that the Sulfasalazine isn't great for my liver either. Maybe worse? Not sure. In a perfect world I wouldn't need any drugs...but this isn't a perfect world.

Physically I feel the same. Exhausted, nauseous at times, bloated, and my legs still ache insanely bad. Here's my enlarged belly:




















Maternity clothes time anyone?? You can see how that far side (what looks like my left but is actually my right as this was taken in a mirror) sticks out more than the other. Hello liver!!

I can't say I'm looking forward to next Monday. I already read Harry Potter and the Deathly Hallows. Finished it in two days. Didn't want to but couldn't put it down. I'll have to find something else to read/watch for that day. Ah well...

My left eye flared up yesterday. Looked very ugly and angry. It's been awhile since the last flare so I was kind of surprised to see it red again.

I also haven't set up an appt. with a pulmonologist yet but I'm working on it. Sometimes I think my breathing issues when I'm just laying around (shortness of breath for instance) comes from my liver being enlarged. Other times I wonder if it might be due to Alpha-1 Lung disease. We'll see.

I'm not dead yet

Tentatively I started the Sulfasalazine yesterday and tried not to worry myself into a rash--because then how the hell would I know if it was the worry or the drugs?!!! ;o) I had taken half a Percocet in the morning and although I needed it about the same time I took the Sulfasalazine I held off to ensure that if there were any side effects I would know where it was coming from. I actually felt a tad better that night. Not nearly as achy. It is waaaaaay too early for the Sulfasalazine (man I hate typing that out) to have done anything, yet there it was. So who knows. Today I took it in the morning. I did get some mid-morning nausea that was no fun but tolerable. Thankfully the nausea wore off fairly quickly--about 2 hrs. and (knock on wood) I haven't had any rashes, itches, vomiting blood, or death. Sweet! If for some reason I suddenly drop off then chalk it up to the drugs finally killing me.

The phone rang this morning around 8:45 and was one of the gals from Dr. H's office. My liver biopsy is scheduled for July 30th at 9:00 a.m. I have to be there at 8 for some pre-biopsy bloodwork, then they'll do the "nasty," make me lay on my side for awhile (or so I've read), and I've been instructed to stay in bed the rest of the day to minimize the risk of bleeding. Thankfully I should time it about right for me to begin reading the final Harry Potter book. Yes, I realize the book comes out well before I get jabbed in the liver, yet I want to hold off as I re-read book 6 first. Or I may say "screw it" and just dive right in to Deathly Hallows. I figure I'll get incredibly bored staying in bed but I also figure I'll be sleeping a lot that day too. So maybe I shouldn't wait on starting book 7 on that day. hmmmm....

They also moved my appt. to Aug. 13th. I have to see that idiot NP again and I swear, if she so much as says anything remotely assinine again I will walk out. Apparently Dr. H will be in the clinic that day as well although it's unclear as to whether or not I'll actually see him. I guess he and the NP are collaborating and will be going over my test results together. Man do I hope I see him personally. Of course I plan to pick up my biopsy results before the appt. so I can go over them, research, and know what questions to ask. Plus I'm an impatient little shit. Course I say that now and watch...the stupid medical records red tape at BMC will put a halt to that. Fingers crossed that since it's being done at the hospital that I can access it via my medical records there. They are a billion times easier to work with down there!

I took some pics of my "baby" tonight. "Baby" meaning my huge belly. I could easily pass for being about 4 mos. pregnant. Maybe even 5. I have seriously thought about getting some maternity clothes just so I can be comfortable. It's not easy, nor fun, squeezing your big belly into jeans that fit everywhere else BUT that area. And don't even get me started on my shirts. The ones that used to be roomy and let me breathe now look like they were shrunk into oblivion. I thought getting one of those empire-waisted type tops would be great for me. They would have been except that I have to get a medium so my boobs fill the top out and normally that would leave the bottom half somewhat loose for me. Like how it's supposed to be. Nowadays, however, the boobs fit and the belly stretches the fabric taught. Not a good look. Unless you're pregnant. And I'm definitely not pregnant.

Yeah for ascites...not.

Where's the shirt that says, "I'm not pregnant. I just have a pissed off liver." I need one of those.

Seriously

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

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

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

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

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

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

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

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

I am so ready for some good health.