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.