Monday, June 30, 2014

The Twin and her 100 Gallstones

What a week!  Thanks again for the prayers for Twin and the thoughts for butterfly and me.

Twin had an endoscopy on Wednesday afternoon, so I went down there to be around for her.  She was having a general anesthetic for it and after she woke up she was pretty uncomfortable and really just wanted something for the pain and to go to sleep.  However, it happened to be thunderstorming here and although the bad bad weather was north and west of us, the hospital made her stay in recovery on the first floor and later made us move to the basement. For some unknown reason, they said they couldn't give her anything for the pain. I still don't know why--no order?  Surely they can give medication in the recovery rooms?  I mean, I know they can in surgical recovery, this was more a procedure and on a different floor from surgery, but still.  So we spent an unpleasant few hours waiting for the all clear.  The only good thing to happen during that time was the arrival of this:

 No, it's not just a cart left hanging out.  I should have taken video.  No, you see, the doors to the right of the frame opened and this guy rolled out and then it said "Calling Elevator".  Seriously, it talked.  It didn't press the elevator button, but the elevator came--the very one of three elevators that it had gone to sit in front of.  It then announced that it was going to board the elevator and to "stand back" (though there was no one on it) and proceeded on it's way while I squeed a little.  I'm sorry, I thought it was super cool.

I posted this on facebook and my very helpful lovely friends and friends of friends identified this as TUG.  It's a robotic cart that delivers supplies all over the hospital.  Apparently it often has hats and even eyes on it, but I didn't see any myself. That would only have made it cooler.

Anyway, after about 2 hours, they finally took her back to her room and gave her some pain meds. Unfortunately, after having had to wait too long, she was still pretty uncomfy most of the evening.  Her lovely boyfriend Jon arrived (seriously, I became even more aware of his awesomeness this week. He was basically at the hospital all weekend with her and he lives almost an hour away) and I headed home shortly thereafter because I felt really rotten myself.

It was a combination of things.  First of all, I'd totally forgotten to bring a sweater and the hospital was effing freezing!  By the time we got back to her room I was feeling awful just from that.  The lovely nurse noticed me using a little throw blanket as a shawl and the dear woman brought me a warm blanket, which was amazing.  While Angie rested, I curled on the couch for awhile. Partly because of the cold but also probably from sitting still too much in horrible chairs, my knees were also super sore, stiff and painful.  Finally, I'd been having a lot of pain and pressure since Friday that I was guessing was just excess gas (sorry tmi).  I'm not talking a little I'm talking PAINful.  I could usually get relatively comfortable if I got settled in one position, but if I stood (or sat after standing) it would be pretty painful again.  I am not sure why that was suddenly such a problem, except perhaps that my normal workout routine of at least 4 days per week had suddenly flown out the window (the last time I worked out between illness and hospitals was 6/16) and somehow that really messed up my system?  I'm not sure but it sucked. A lot.  I went home, at a little dinner, walked AJ up to bed and lay on the couch. I watched TV for a bit and then went to sleep.  I was running a bit of a fever, probably left over from my cold I guess.  I went to bed at 10 and when Adam came to bed at midnight, I was really not feeling well, so he rubbed my belly and it really helped.  My sweet husband.  Anyway, I felt better the next day and thought it's still bugging me a little bit, it's much better, thankfully.

Wednesday I stayed home so I could be at the hospital for her surgery. My mom went up to see her for a bit while I stayed with the kids. Then she came home and got us and dropped me back off at the hospital.  We hung around for awhile (she was feeling better from the night before, just nervous) and then they took her to surgery.  I got some lunch and read a book on my kindle until the surgeon came to talk to me.  He said everything had gone well and her gallbladder really needed to come out. He said that there were probably over 100 stones in it!  Insanity.  So good riddance to a non-essential organ!  Eventually they told me I could go wait in her room and they brought her up a half an hour or so later.  She was a total rock star, getting up to use the bathroom before she even got back in her own bed.  She was in pain, but she dealt with it well.  I helped her when I could and then just hung out playing with her IPhone (I think I'm just about sold on switching to an IPhone come January when I get my upgrade) and reading.  About 6 pm she sat up for awhile and ate some graham crackers (first solid food since Friday!) and took a few pills to try to help her discomfort and we ordered her some jello and juice from room service.  My dad stopped in to visit so I left around 7.

Angie got to come home Thursday afternoon.  She's going to stay with us for a day or two since she lives alone.  I did not like owie things happening to the twin.  I guess I can relate to how she felt now, since I've been in her position several times before.  It's not fun.  I wanted to fix it.  So I'm glad she's better!  Yay twin!

My knees are still killing me and I actually still have a lingering sore throat I can't seem to get rid of.  And boy am I tired for spending two days sitting around a hospital.  No idea why that's so tiring!  Come on weekend!  Mama's ready for you!

So I got a few comments today which made me realize I wrote this post and didn't publish it!  So I'll just add here that the much anticipated weekend included the worst migraine I've ever had, complete with ER visit and IV meds.  It started Saturday morning and by evening I couldn't take it anymore.  So that was fun.  It's better today, but still hanging around.  Tyler's still acting sickie and he and I both got antibiotics on Friday morning.  Hopefully this is the end of the sickness and all things unpleasant for awhile!  PLEASE! :)

Monday, June 23, 2014

Three years ago and a prayer request

Prayer request first.  Twin sissy has been in the hospital since Saturday with gallstones and pancreatitis.  Me no likey.  So it looks like she'll be having her gallbladder out tomorrow.  She's never had surgery before, so please send her any prayers, thoughts and positive juju that you can!  I loves her much!

Since this a serious post, I just also need to recognize that it's been three years yesterday since I lost my little butterfly (Posts HERE and HERE).  I may not have known I was pregnant for more than a few days, but I still remember and think about it sometimes.

And poor AJ had an ear infection complete with extreme non-AJ like days (extremely scary lethargy) and a fever of 103.  So yeah, not a great few days for us. Le Sigh.

Thursday, June 19, 2014

My Appointment and Some Results

So I had my first appointment with my rheumatologist on Tuesday.  I walked away with mixed feelings.  She was very nice.  And everyone I met said great things about her, said I would get excellent care from her.  But I ended up getting intimidated and clamming up, not stopping her to make sure to ask all the questions I wrote down.  Silly me.

As I said, she was very nice.  She went over my history and asked lots of questions.  Then she had me change into the lovely gown and she did a quick physical exam.

Wish I'd worn socks.  Time to repaint the toenails.

Then she had me change again and brought in the other doctor, just to let him look at my eye.  I was a good sport about it, I'm used to people wanting to take a peek at it, since you're very unlikely to see it again (for the backstory on my freaky eye, click here).  Then he left and she went over all my blood test results from my regular doctor and told me about some of the tests they want to run now.

She wasn't too concerned about my blood counts, she said lots of women have low white blood cell counts.  I was a little surprised with that, since there was a correlation in what I was reading about auto immune disorders and low WBC counts, but whatever, I guess they could be unrelated.  She confirmed that my ANA was positive, but noted that she wanted to run it again, as the result depends on the person running the test (I guess her lab is more specialized in these sorts of tests so they'll be more accurate).  She also wanted to run several tests that were sort of already run before, but in a more specific, broken down way, so that she can be sure the results are clear. She also said that early miscarriages can be related to auto immune problems, so that's something they'll be looking for. Finally, she wanted to get some X-rays of my back and pelvis, since my back pain has been so severe at times.  She seemed less concerned about my knees, but said that she more suspected osteoarthritis was the cause of that pain, and that it could be that even though my blood isn't show signs of a lot of inflammation. She said we could see about X-rays on them later if needed.  I'm realizing now I should have pushed to go ahead and do that, but I got overwhelmed and just went with it.

So she gave me the orders for the blood work and X-rays and sent me off, saying that she'll see me in 3-4 months, but she'd call me when the blood work came in, which could take up to two weeks.

I made an appointment for September 18th and trotted off for my blood-letting and radiation exposure (lol).  The phlebotomy (check out my terminology) took a healthy six vials of blood before I scooted off to disrobe again (this time I didn't even get to keep my bra--underwires) and have myself X-rayed.  That was fairly uneventful other than my hip not appreciating the lack of padding on the table and my back being generally annoyed these days, but after that I was done and on my way.

Oh, and when the nurse took my temperature, it showed I had a fever. I never run a fever.  Seriously, I'm one of those people that sit right about 97 degrees all the time.  My throat had been scratchy and AJ's got a runny nose and major case of the fussy's so by the next today, we all have it to varying degrees.  My fever has finally taken a hike, thankfully, so that's a start.

I was quite surprised when my Dr. L (the rheumatologist) called me this afternoon. I hadn't expected to hear from her until all the results were in.  She said that my X-rays looked good. My ANA is still positive but the rest of my bloodwork looked okay, including blood tests specific to Lupus.   She's still waiting on a few more tests, but at this point she says that my symptoms and the positive ANA "mimic lupus".  So at this point, she's not saying I have lupus, but that there are other things that have similar symptoms.  She wants me to start taking plaquenil, which is often used to treat lupus and other auto immune issues. It prevents inflammation and should help with the joint pain, fatigue and other symptoms.  She said the medication takes awhile to work though, around three months to start helping and it will do more the longer you take it.  And it's safe during TTC and pregnancy, if we chose to pursue that.

When she called, I was holding a sleeping AJ, so again I didn't really have a chance to ask a bunch of questions.  I'd like to get more details on all this, so I'll try to do that when (if?  she didn't say specifically) she calls with the rest of the test results.  Otherwise, I can get more information at my next appointment.

So there we have it, for now.  I'm glad to find out that she doesn't think this stuff is in my head and that maybe this medication will help in the long term.  It's intimidating not to know for sure what it is or what it could become, but she seems optimistic about everything.  I feel like at least I'm dealing with a good doctor, though I need to work on pushing for more information from her. 

Thank you all so much for your kind comments on this...I can't tell you what your concern means to me, I'm really touched!  <3  This has been unexpected, but so many things are in life.  So thanks for reading and thanks for your thoughts and prayers! 

Wednesday, June 11, 2014

Review: The Fault in Our Stars

SPOILER ALERT:  This is a review of the book (and a small one on the movie) "The Fault In Our Stars" by John Green.  I may or may not give away important details of the story, but I won't spoil the ending, so if you don't want to know anything, you've been warned! :)

So this is getting MAJOR hype lately, because of the movie release.  I'm very into medical drama/angsty/heart-wrenching stuff (I read Lurlene McDaniels as a teenager and have a longtime love of Lifetime movies), so it seemed right up my alley, but I know there had to be something more for it to be so mainstream.  Twin saw the movie last week and we're planning on seeing it together asap, but on a whim, I decided to snag a copy of the book yesterday on the way back to work from Physical Therapy.

Obviously, since I've barely had the book for 24 hours, I liked it.  In fact I loved it.  It's beautiful, sad, and really well written.  These kids (they are like 16) are not your average kids.  Not only are they living with cancer, but they speak in a way that is both mature for their age and almost of another time, which is very charming.  The banter between Hazel and Augustus is funny and sweet.  She's considered terminal and he has been in remission for awhile when they meet at a cancer support group he's attending with a friend.  She resists his attention at first, because she considers herself a "grenade", that when she dies, all it will do is hurt anyone around her that cares for her, so she tries to push him away, but he won't let her.  He says:

"You realize that trying to keep your distance from me will not lessen my affection for you."

She finally accepts that this is the truth and begins to let herself feel something for him:

"As he read, I fell in love the way you fall asleep: slowly, and then all at once"

In his words:

"I'm in love with you, and I know that love is just a shout into the void, and that oblivion is inevitable, and that we're all doomed and that there will come a day when all our labor has been returned to dust, and I know the sun will swallow the only earth we'll ever have, and I am in love with you."

Later, she admits she doesn't regret letting herself love him:

"and only now that I loved a grenade did I understand the foolishness of trying to save others from my own impending fragmentation: I couldn't unlove Augustus Waters. And I didn't want to. "

And finally, she gives herself up to it.

"But, Gus, my love, I cannot tell you how thankful I am for our little infinity. I wouldn't trade it for the world. You gave me a forever within the numbered days, and I'm grateful."

Intense, right?  And just unbearably sweet.  It's a really really beautiful book and I won't spoil the ending here. 

Bottom line, I definitely recommend reading this! 

Twin and I went to see the movie and it was also excellent.  Unlike so many movies that were books first, very little is changed and cut from the story.  Minor things were cut, slightly rearranged to mesh two scenes together and things like that (hey, it's a 313 page novel condensed into a 2 hour and 6 minute movie), but overall very little was changed.  I was pleased that just about every one of my favorite quotes from the book were used verbatim in the movie.  The actors were charming and witty and of course it was heartbreaking.  There were even a few parts that were changed (lines embellished and the like) that I was thinking 'It wasn't like that in the book but I like it!'  The egg scene (“You see, we may not look like much but between the three of us we have five legs, four eyes and two and a half working pairs of lungs but we also have two dozen eggs so if I were you, I would go back inside.” Embellished from the book and ingeniously so!) and even the last spoken words in the movie were changed from the book, but it was true to the story and enhanced it in a lot of ways.  SO!  Movie--Also highly recommended!

Quick update on me:  Not noticing any real effect from the meds I'm on or the physical therapy, but I'm being good and doing both.  1 week until my rhemotologist appointment.  Thanks for your lovely comments from last entry!  I'm hoping for answers and yes, not scary ones! :)

Tuesday, June 3, 2014

Things that make you go hmmmm

I had planned for my next post to be about my thoughts on possibly trying to have a third baby.  But then something happened that put those thoughts on hold, at least somewhat.

I went to my doctor about two weeks ago.  I'm still stuck on this stupid plateau, probably mostly because I haven't been doing that well on sticking to my diet food-wise, but I was also frustrated because pain in my knees was keeping me from doing my workouts full-out.  I've been having particular problems with my right knee, which I always depend on being the "good" knee.  I've had two surgeries on my left and it's just weaker. It hurts and gives out and I just don't trust it much, so when my right knee started to hurt during certain moods, I knew it wasn't a good thing.  My workouts (I am partial to Jillian Michael's DVDs) are very heavy on the squats and lunges and I was actually getting pretty good at most of them (aside from left leg only squats, I don't know if I'll ever be able to do much with that).  But suddenly I couldn't do much bending with weight on a leg without pretty significant sharp pains in my knees. 

Since I had a few other minor issues, I decided it was time to see my doctor.  I see a Physician's Assistant, actually and I've mentioned before that I love her to death.  I went to see her on May 20th.  We had a good talk and she decided that my knee pain could be one of a couple things.  It could be an injury, maybe even a partially torn tendon, although I didn't recall a certain OW moment, just a gradual increase in pain.  But she also was suspicious of something like arthritis, particularly because my knees are not the only thing that hurt on an every day basis.  I also have had trouble with my lower back, neck, feet and more occasionally, my hips, wrists and elbows.  These range from minor to severe (particularly my back, which I've talked about here before and my neck, which mostly causes very bothersome headaches).  So in the end, she decided to do a battery of blood tests and also send me to physical therapy.

Since it was just before a long holiday weekend and they were ordering quite a few tests, Amber told me that the results probably wouldn't be back until the next week.  I scheduled an appointment with the physical therapist and waited.  Tuesday afternoon on the way home, Amber called with my results.  The good things were that my cholesterol was great (yay!), and actually my rheumatoid factor and sed rate (both indicators of arthritis) were both normal.  My white blood cell count was only slightly low (pretty good number for me, since I usually run quite low).  My vitamin D level was also low.  She said they'd like to see a level of 50, and mine was 28, so she wanted me to start taking extra supplements. I already take a multi-vitamin, but now I'm taking 2000 iu more a day. 

The main concern was that my results showed positive for something called ANA.  That stands for anti-nuclear antibodies.  Apparently, a positive result can be an indicator of an auto-immune disease.  The results come back with a number that has something to do with diluting the sample.  The higher the number, the more dilution is necessary (higher=more ANA in the blood, which is not a good thing).  It's done in a series--1:40, 1:80, 1:160, 1:320 and so one.  My result was 1:1280, so that's high.  It's also classified by the pattern such as homogeneous, speckled, centromer, etc.  My result had a speckled pattern. So, long story short, my doctor was quick to refer me to a rheumatologist.  She did say that another test the run that can point to an auto immune problem (ENA) was negative.

The rhuemotologist insists on a two week window before any new appointment, so they can get your records.  They asked me to call my doctor to remind them to send them over, so I'm betting they already have them by now, but still I have to wait until June 17th for an appointment.  I really hate having things hanging over my head.  Of course I've been spending time pouring over my test results and googling like crazy, but basically the bottom line is, it could be something or not.  With as high as my titer (that's the term for the number on the result) is, it's pretty unlikely that it's NOTHING.  I'm the type of person that good or bad, just prefers to KNOW what I'm dealing with.

I'm conflicted too, I've dealt with pain like this for a long time. It would be nice, in a way, to know that there is a reason for the pain and tiredness that I've tried to convince myself were normal.  And yet I don't want it to be something scary, as silly as that sounds.  Years ago, probably close to 10 years ago, I tried to find out if it was indicative of some sort of problem, but at the time, all seemed normal.  I don't know if they tested my ANA back then or not. 

The more I read up on some of the possibilities, the more I think that certain things could fit.  For example, my low white blood cell count can be a symptom of auto-immune diseases.  So could the mouth ulcers I've gotten on and off since high school--they aren't fever blisters, they are actually in my mouth and are terribly painful.  I've recently noticed several small rashes and itching on my arms and elbows.  Infertility and pregnancy loss can even be related.  But all of these things could be totally unrelated too.

So I wait for answers. In the meantime, my doctor prescribed some cream for my rashes and an anti-inflammatory/pain reliever called meloxicam.  So far, I'm not noticing a difference with the medication.  For now, I'm doing my workouts as much as I can (though my PT said no squats or lunges for a week) and going to therapy.  My PT Kathy is very nice.  Apparently, my knees are a mess (not surprising).  My kneecaps are crooked, my left leg has significantly undefined muscles compared to my right, and she's found several weak spots we're working on.  Yesterday she taped my kneecaps into the right positions and that feels really weird and actually makes them ache, but hopefully it will help.

I'm not good at waiting.