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.