A Slow News Day (7 Months)

You know how when you watch the local news, and the lead story is about a lost dog or a fender bender, and you think to yourself, 'Wow, it must be a slow news day!' Well, it's a slow news day here. There is not much news on the hip front, which could be either good or bad, I suppose. I choose good. And even though I really don't have a lot to say, I thought I should write a seven-month update.

After my last visit to the orthopedist a month ago, we had settled on... lotion. I was skeptical, but figured what the heck, right? Supposedly this magic cream ( = a sophisticated snake oil?) was to be mailed to me? Nothing. Finally, last Friday, I inquired about this via e-mail, and I also asked for a refill for my meloxicam prescription. Every time I try to stop taking it, I can definitely feel it. My orthopedist's assistant got back to me on Monday telling me she had ordered the snake oil, and gave me a number to call to find out where it was. I didn't, just because. Because last week was insanely busy, and because it doesn't matter. In my heart, I know this is beyond snake oil. She also told me she would check with my doctor about refilling the meloxicam when he got back into the office on Tuesday. I waited all week and finally sent a follow-up e-mail on Friday. She called me within an hour to tell me she was faxing the request to my pharmacy. She seemed annoyed. Geez, woman, sorry to be such an inconvenience.

Anyway. I'm supposed to see my orthopedist in a week and half to talk about how the snake oil is or is not helping me, and even though I have not actually tried the snake oil, I'm going to keep the appointment, because I have a plan laid out in my head. The plan is:

• I'm going to ask to have an arthrogram. I feel as if I need to know what's going on, regardless of whether or not I'd agree to another surgery. To be honest, at this point, my level of discomfort is enough that I cannot completely rule out the possibility that I might seriously need to consider another Something Major that is beyond snake oil and needles. Even if it's not right away, I need to be able to prepare mentally for various possibilities, especially since I'm foreseeing some major changes in my future, and any long periods of being on crutches need to be worked into my plans. (I am a planner.)
• If the arthrogram shows something significant - i.e., something requiring surgery to fix - I think I am going to shop around for a new orthopedist, or at least get second and third opinions about the best course of action.  
• If the arthrogram shows that everything is splendid - i.e., the pain I'm feeling is really just normal, post-surgery pain - I think I am going to try physical therapy again, and I am definitely going to shop around for a GOOD physical therapist. I think I will also try some massage therapy, because my muscles feel really tight. Of course, I know now that the muscle pain could be the pain from inside the joint manifesting itself as muscle pain, which is why I think it would be helpful to get an arthrogram and at least know what I'm dealing with.
• And on the topic of massage, also in my plan is to follow up with my primary care doctor for my DVT. It has been six months since I started taking Xarelto, and the blood clot should be cleared up by now. I need to get an ultrasound to (hopefully) confirm this. I should definitely not have any massage therapy until I am sure the blood clot is gone.

Other random thoughts:

• I have gone skiing several times this winter, and my hip has held its own. This is nothing to get majorly excited about, as I actually went skiing last winter, too, at the height of my pain (pre-cortisone shot and pre-surgery) and my hip held its own. Nevertheless, I'm grateful to be able to ski. For a while, I was so nervous about falling that I spent way too much time worrying about how a fall might affect my hip, and I couldn't relax and just ski. But eventually I took a spill while cutting through some trees, and it turned out to be a good thing, because I wiped out and came out with my hip intact. I realized that while my hip does still hurt me, it's not, like, completely unstable and falling apart on me. That's always a good thing. :)
• The last time I went skiing, I definitely felt a lot of pain afterwards, more than the first couple of times, and enough to sort of freak me out. After a little break, I am going to go again tomorrow. I am a little nervous, but at the same time I sort of figure that no matter what I do, my hip hurts, so why not live a little?
• So while skiing doesn't really bother my hip, walking does. And that is slightly inconvenient. LOL.
• I'm also taking an EMT class right now, and there have been a couple times when I've had MAJOR PAIN from deep within my hip joint that really doesn't sit well with me. This came after trying to run and after doing various types of patient lifting.
• This is actually a concern because I am hoping to be become a certified EMT in May and get a job doing something EMT-related over the summer, which is part of the reason I feel like I really need to know what's going on with my hip, so I can plan accordingly.
• Going from standing to sitting and going up stairs are still my major nemeses. I limp. A lot. So much that pretty much every one of my colleagues has commented on it in the past month.
• Also, trying to find a comfortable position for sleeping is still a challenge, as I cannot lie on either side comfortably. I've actually gone back to lying on my back with my legs elevated, which I had sort of abandoned once my DVT seemed to be getting better. But now I realize I slept like that for so long I'm used to it.

I feel... blah about all of this. On the one hand, I don't have a lot of time to worry about my hip, and that's a good thing. On the other hand, the pain is something that is always with me, always on my mind. I have to think it is taking a toll on me both mentally and physically. I also don't like the idea that this blog is turning into one of these Internet horror story blogs that I was so convinced would never be me. But if there's one thing I've learned from reading aforementioned Internet horror story blogs, it's that attitude makes the biggest difference of all. So while I try to go forward in dealing constructively with some real issues of chronic pain and the various frustrations associated with that pain, I am really trying to focus on the fact that I have an awesome life. I am truly grateful for that.

Lotions and Needles (6 Months + 1 Day)

In celebration of being six months post-surgery, I got to see my orthopedist today. LOL. I'm super duper stressed about work right now because I'm in a huge time crunch trying to prepare for the upcoming semester. Being sick and dealing with sick kids for over a month in November and December really put me behind where I need to be right now. Admittedly, I've also had a hard time focusing over the past 48 hours, with my mind wandering to the horrific events in Paris, which hit closer to home than other horrific events. As I was driving to my appointment, 20 minutes away, in bad weather, I was thinking to myself WHY AM I DOING THIS?! Nothing ever comes of these appointments, but yet I continue to go (and then complain that nothing comes of them).

But, I'm glad I kept the appointment. Of course, my hip felt pretty good the past few days. Fortunately, it felt terrible when I woke up, so I was able to describe the pain better to my orthopedist. (Thank you, four-hour night class that I sat through last night, for bringing the pain back.)

My orthopedist really didn't have any earthshattering ideas or insights, but I didn't expect that he would. We had a nice conversation, though. I sent both him and my physical therapist a Christmas card in December, thanking them for trying to help me, and apologizing for being difficult. I told them that despite everything, I knew they were really trying to help me (and I truly do believe that). He very genuinely thanked me for the card, then commented that my kids were super cute, and said that he enjoyed the newsletter, haha. I was never much of a Christmas newsletter person until I realized how much I enjoy reading other people's once-a-year newsletters, even if I barely know them. I probably wouldn't have sent one to my health care providers except there was nowhere to write on the card, so I needed paper to write on. I really didn't think he would read it, though! At any rate, I think the note of reconciliation went a long way, because we spent a good 20 minutes talking about... stuff. He did not seem hurried or impatient as he has in the past, and really listened and responded - that old-fashioned medicine I was talking about a few weeks ago. Some of our conversation was small talk but most of it was addressing the question of What should we do now?

Options:

• Get an MR arthrogram to see what's going on. However, as he pointed out, 'It would probably not change how we go about treating the pain because I'm guessing I can't talk you into letting me go back in and scope your hip again.' I didn't even need to say anything. I think I just smiled because it shows that he knows me fairly well at this point. The thing is that I am somewhat curious to see if something is wrong, or if this really is just residual pain from surgery that for some reason is lasting a freakishly long time. In my gut, I am pretty certain this pain is not normal, but he is right; there is no way I am having another surgery anytime in the near future. And since Christmas always results in a few months of really high credit card bills, and it's a new year, which means having to pay our deductible for health insurance, I'm not crazy about the arthrogram from a money point of view. (Also, it sounds pretty unpleasant, TBH. An injection followed by an hour in the teeny, noisy, tube. Awesome.) So that option is off the table for the time being.
• Go see another doctor. Yes, he actually suggested this. Ha. I honestly didn't feel like he was doing it in a trying to get rid of me type of way; it's just that it seems like he's out of ideas, and thought it might be helpful to have a 'second set of eyes.' I really think he's just trying to do the right thing for me. He said he has a friend who also does hips, who is in a different practice, to whom he could refer me. It's not out of the question, but it's also not on my immediate 'to do' list, either. I think I've had more visits to the doctor in the past year than in the rest of my adult life combined, and I'm not super anxious to add another one to the list.
• Try a topical cream pain killer. That's about all that's left to try in the way of medication, so what the heck, right? I did get some relief from the patches I tried in physical therapy, so... whatever. At this point, I'd be okay with just the placebo effect. LOL. So I agreed to try the cream and revisit him in six weeks. It sounds like sort of an ordeal to actually get the stuff, but an ordeal that apparently I don't have to deal with.

Other things we talked about, in no particular order:

• The return of my snapping hip. It seems like my iliopsoas is acting out. This was after a conversation about how I stopped teaching anatomy labs because cadavers are too stinky, and swapped stories about being stinky after working with cadavers, so he knows I know my muscles and that he can use their real names with me.
• The bursitis I have in both my hips. It's a low priority. I really only notice it when I'm trying to fall asleep because it is painful to lie on either side. But it is worth noting that it is still there.
• Cortisone injections. He mentioned something about them, and I reminded him that the last one didn't help at all. Then I asked him if he had ever had one. He said no, but that he had given a lot of them. I informed him that they hurt. like. hell. and he seemed surprised. He must have done all of his injections on really stoic patients because it's hard for me to believe no one ever mentioned the extreme unpleasantness of them before. As the saying goes, you learn something new every day.
• My left hip. He was doing his labral impingement test on me and using my left hip to show me how in a normal hip, certain motions shouldn't hurt. As he was manipulating my hip to do said motions, I think I must have winced in pain. Then I told him I really scared I had the same issues in my left hip, but I couldn't even think about that right now. He was very respectful of that and put my leg down and said he didn't want to go looking for trouble. Ha. Maybe if I ever have that MR arthrogram, I'll see if I can have both hips and my left knee done all at the same time and just get it all over with at once.
• The motions that cause pain. I mentioned that my major frustrations at this point are going up stairs, hip flexion in general (which is exacerbated by stairs), and going from sitting to standing. If I've been sitting at my desk for even just a few minutes, I'm back to having to stretch for a good minute before I can walk. That said, there is not a single motion in particular that seems to trigger the sharp pain; that seems to come at random times.
• Limping. He noted that I limp. I told him I don't even notice that I do it anymore, but the idea that I do embarrasses me. I don't think I do it all the time, but definitely after I've been sitting and then stand up and try to walk (which is exactly what happened after I waited for about ten minutes for him, then talked to him for about five minutes, then stood up and tried to walk over to the examination table). He agreed that I'm too young for this.
• Generally, the ups and downs of all of this. I told him I have good spells where I think this is finally over, but then I start to go downhill again. His response: 'I don't want you to be like a sine curve.' (The real question is: Is he super geeky or does he just think I'm super geeky and hence trying to communicate with me in geek language?)

Things I forgot to talk about:

• My scars. Six months out, my scars still bother me. They don't really hurt, but they itch. I've consulted Dr. Google about this, and I think it's keloid scarring. (Interestingly, this is also common in people with Ehler's-Danlos syndrome, which my daughter supposedly has, which would make it likely that either I or my husband have it, too.) I wanted to have him take a look at my scars just to see what he thought, but I forgot. Maybe it was 'on purpose,' though, as it's weird to have to semi-undress for this.
• My back pain. One of the most amazing things after surgery was that for a while my back didn't hurt. It was the first time in decades that this particular pain went away, which was both unexpected and extremely awesome. It never really occurred to me that fixing my hip pain might make my back feel better, too, so this was just bonus material. Even though I was on crutches, I had virtually no pain. That pain is back now, though, and I can't help but think it must be related to something bad going on with my hip. It's not an urgent issue, nonetheless, it is worth noting.

On the way out, I popped into the PT room to say hello to my therapist, who also very genuinely thanked me for the Christmas card. We chatted a little bit, and he asked if I would consider a therapy where I got needles stuck into me. OMG are we grasping at straws or what?! Lotions and needles. This is what it has come to. I'm pretty sure I raised my eyebrows at him. He then went on to explain that this 'dry needling' was sort of a Western form of acupuncture: 'In acupuncture, you stick needles in the shoulder to try to help the hip; in dry needling, you stick needles in the hip to try to help the hip.' LOL. To be honest, I'm not sure how psyched I am about Western medicine right about now. At any rate, he wasn't pushy; he told me to 'look it up' and see what I thought, and let him know if I wanted to give it a try. I did tell him I'd probably try just about anything at this point. At the same time, I'm reminding myself of my students who come grubbing for points at the end of the semester. This all seems so... desperate.

Nevertheless, I consulted Dr. Google about dry needling, and there does seem to be some science behind it. It's not snake oil. Basically it seems to trigger the inflammatory response in order to promote healing, which seems to go against traditional treatments of, you know, taking anti-inflammatories. LOL. So perhaps I'll give the lotion a try, and if I still feel like I'm drowning after that, I'll jump onto the needle boat. And while I'm speaking about desperate, another option that occurred to me in writing all of this is massage therapy. However, I want to wait to make sure my blood clot is cleared up 100% before going this route. Hopefully this will happen in February. Fingers crossed.

All in all, it was a good day. As I've mentioned before, sometimes I want to be really mad at my orthopedist and my therapist, but then I go in and see they are people, just like me. And just like I do my best at my job, they are doing their best at their jobs. Unfortunately, as I know, sometimes your best just isn't enough. Nonetheless, it is helpful to be face-to-face with my orthopedist, who honestly seems like one of the super nicest people I know (and definitely the super nicest orthopedist I've ever met). Maybe he has a ways to go in terms of his medicine, but it's impossible for me to be angry with him when I see him in person. And that's a good thing, because I definitely don't have the time or energy to be angry.

You Are Always on My Mind (24 Weeks + 5 Days)

When kids are little, people often talk about how old they are in terms of months. That seems to last until they are two, at which point they just become two, and not 24 months; then they are 'just turned two,' then 'almost 2 1/2,' then 'almost three.' In typing out that I'm almost 25 weeks post-surgery, it struck me that I should really be talking in terms of months and not weeks. It has been almost six months. Six months. Somehow that seems much longer than 25 weeks.

The past month has been rough. I had a sinus infection turned respiratory infection followed by a GI bug followed by the flu, and everyone else in my family also had the latter two, which was fun. Not. This basically kept my son out of daycare for two weeks, during the most hectic time of the year for both me and my husband. There is just nothing like your body ejecting anything and everything out both ends AND having to clean up after two kids doing the same AND THEN having to drag yourself into work because it's finals week. (I can teach with a cough, with a sore throat, with a fever, with a headache, with a blood clot, with a painful hip, and even while loopy on pain meds, but being in class with a GI bug is The. Worst.) Nevertheless, my husband and I rallied, and recovered soon enough to do a little bit of Christmas shopping the last two days before Christmas, and we had a lovely Christmas. I feel so lucky. I truly have a blessed life, which makes me feel bad when I do what I am about to do, which is complain.

In the midst of so many horrible things happening in the world, it seems sort of petty to still be pissing and moaning about my hips, yet I realized the other day that even nearly six months post-surgery, my hips are always on my mind. The first thing I do when I wake up in the morning is wiggle my legs around to see how my hip is feeling, and there really isn't anything I do during the day during which I do not think about my hip at least once while doing it - even if it is just trying to get into a comfortable position to sit and watch TV. And it is the worst at night, trying to get comfortable so I can go to sleep. Granted, I have trouble falling asleep in general, but the pain in my hips and especially my inability to lie on my side without pain just makes my insomnia worse (which is why I am writing this entry at 1:30 in the morning). I feel like the chronic pain is really taking a toll on me. It's not life-threatening or even life-altering, but it's always there and it's always on my mind and is somewhat exhausting, both physically and mentally. I've really tried to accept the pain for what it is, and that has actually helped, but I hate that it is always there, that it is something I have to think about 100 times a day, even if just for a few seconds. I am completely aware that this is a 'first world problem,' and while I'm thankful I don't have something more urgent to take my mind off of my painful hips, I'm also wishing they would feel better already. I mean jeez.

In more positive news:

1. The pain seems to be about the same no matter what I do, which is a good thing in a twisted sort of way. LOL. I figure if my hip hurts the same whether I'm lying down or sitting down or riding my bike, I might as well, like, do stuff, right? We had planned a ski trip, which was supposed to happen a week ago, and I was anxious to see how my hip would hold up. Unfortunately, we had to cancel the trip because of the flu, but hopefully we can squeeze in a make-up trip sometime within the next month. At any rate, I went skiing last spring, when my hip was at the height of its painfulness, and skiing honestly hurt less than walking, so I figure if I am going to be in pain, it might as well be while doing something fun.

2. The meloxicam definitely helps. I mentioned that I had stopped taking it for a brief period while I was taking so many other meds, and I noticed that my hip started to hurt a lot more. I started to take it again, then ran out. When I got the prescription refilled, I also dropped off the script for naproxen/Aleve that my orthopedist had suggested I try as an alternative to the other meds. I tried it for about a week and it didn't help nearly as much. While I really don't like having to take an anti-inflammatory regularly, I definitely feel better now that I started taking the meloxicam regularly again.

3. My left hip feels mostly better. Aside from the fact that I can't really lie on my left side and fall asleep, it doesn't bother me too much during the day. This is a small victory considering my left hip didn't hurt much at all until I started physical therapy, but... oh well. WCYD?

4. My leg feels pretty much entirely better, even when I squat down. I am hopeful this means that the blood clot is gone, because I would really love to get off the Xarelto in February, which is when I'm going to go in for another ultrasound.

I'm going in to see my orthopedist on January 8th, and I basically have zero expectations. I'm undecided on the path I want to take after he tells me to wait another few months, and everything will be okay. But, I still have a while to contemplate this. In the meantime, I still hold out hope for a less painful 2015. Happy New Year!

'Tis the Season (20 Weeks + 6 Days)

I mentioned in my last post that I've been ridiculously sick for two weeks now. I started taking an antibiotic on Wednesday and that has helped a lot, but I haven't had a good night's sleep in, like, forever due to incessant coughing. But that's not actually what I came here to write about.

My hips. are. killing. me.

And I'm really unhappy about this. In fact, I sort of want to cry. It's not the pain so much as the reality that is sinking in that I'm basically not any better off than I was before the surgery. I know I've had a lot of ups and downs since surgery, and I'm currently in a 'down,' but I also had a lot of ups and downs before surgery. And... the pain that I've been having for the past week is exactly the same as the pain I had before the surgery. And... my snapping hip has returned with a vengeance. WTF?

When I think about the fact that post-surgery I have had a cortisone injection and have regularly been taking either a pain killer or anti-inflammatory or both, it's actually possible that I'm worse off than before the surgery. Also, my left hip didn't hurt pre-surgery, nor did I have 'chronic thrombus.' So all in all, this is an epic fail. While I'm thankful that this is nothing life-threatening, and not even something that threatens my daily routine (unless you count extreme grouchiness due to chronic pain as a disruption), I'm starting to feel a little bit uneasy about all of this.

At this point, my uneasiness mostly centers around feelings of what do I do now? I'm obviously super duper anti-surgery at this point, but at the same time, I have this level of pain that OMGIcannotlivewith for another 40 years. I mean, it's the same pain I had that led me to have surgery in the first place. At the same time, PT hasn't helped and cortisone injections and cortisone patches haven't helped, so what can I do? If this is as good as it gets, that's, well... depressing.

I think a lot of things are contributing to my current levels of pain. One is that I stopped taking meloxicam again. When I started taking an antibiotic on Wednesday, along with cough medicine + Xarelto + Vitamin D, somehow it just seemed like too many pills. I started to feel like my mother-in-law, so I temporarily ditched the meloxicam. I understand there is absolutely no logic behind this, I'm just sort of phobic of pharmaceuticals in general. I guess the good news is that the meloxicam does seem to help, because both times I've stopped taking it, my hip pain gets worse. The bad news is that I feel like four months post-surgery, I should not be this reliant on medication to get me through the day, especially considering I've also had a cortisone injection that should be keeping the inflammation in check. Part of the reason I opted to have the surgery is so I wouldn't have to rely on pain medications and anti-inflammatories for the next 40 years. So while I do realize I could start taking meloxicam again, and that it would probably help, that doesn't fix the cause, just the symptoms. (And over break, I just finished reading The Story of the Human Body, so I'm very much into treating causes as opposed to managing symptoms.)

The other contributing factor to my pain is that I've been trying to do a lot of yard work this weekend. I normally take very good care of our yard, but I wasn't able to this summer. Our yard got very overgrown and slightly embarrassing. Since we had some warm weather over Thanksgiving break, I at least wanted to clean up all the dead vegetation and put the yard to sleep for winter in a proper manner. Unfortunately, the squatting down and bending over associated with yard work has resulted in ridiculous amounts of pain. I know my physical therapist would tell me not to do things that cause pain, but I really don't feel like squatting down to pull up crab grass or pick up leaves should be causing this much pain at this point. Again... WTF?

So here I am. And I have no idea what to do.

The Never-Ending Cough (20 Weeks + 2 Days)

Ever since my orthopedist told me to ditch the Xarelto, and I decided to ignore him, I've been meaning to schedule an actual follow-up appointment with my husband's PCP to, I don't know, discuss a plan? Although I informally consulted several other medical professionals regarding their thoughts on continuing Xarelto despite improvement in my DVT, and all agreed on a minimum of three months, I never got a formal opinion. I figured that at the very least, I would need my husband's doctor to write a script for my Xarelto, since I could hardly ask my orthopedist to renew it after he told me to stop taking it. I just hadn't gotten around to it yet, mostly because I'm not out of Xarelto yet. (Thank you, drug reps, for free samples. :))

However, I saw my husband's doctor this morning, because I have been hideously sick for 10 days now and finally realized that I was getting worse, not better. On Monday, after a week of constant nose blowing + the Xarelto, the blood vessels in my nose finally rebelled, causing The Mother Of All Nosebleeds, at least in my adult life. (I've had worse as a child; one time the bleeding required having all the blood sucked out of my nose and then having my nostril cauterized.) Anyway, my husband texted Dr. A last night to see if he was seeing patients today, and if so, if he could squeeze me in. Since my husband took the day off and the kids don't have school, we slept in this morning (although, due to my coughing, I'm not sure either one of us has actually slept for real in several days). We both 'woke up' around 7:30, at which point my husband checked his phone and told me Dr. A would see me 8:30. It turns out that Dr. A was not actually seeing patients today, but agreed to squeeze me in between paperwork. I only later found out that my husband's text was: My wife has a marriage-ending cough. Is there any way you can see her tomorrow? LOL.

Since Dr. A was doing me a huuuuuuge favor, I decided it would not be an appropriate time to bring up the blood clot. However, he brought it up on his own. (I used to see his PA, who has now moved, so he has all my records.) After diagnosing me with having 'The Crap,' he asked how my right leg was doing. I launched into an abridged version of the saga, and he reiterated that while he did not want to insult anyone, according to his training, I should be on Xarelto for six months, at which point we should do another ultrasound. He also thought that it might not be a bad idea to have a lab workup of my blood done, just to make sure I don't have any clotting disorders or anything funky, and we can also check cholesterol and all that fun stuff. Since I can't have that done while on Xarelto, we should schedule that for approximately two weeks after I stop taking it. That means sometime in February. He asked me if my orthopedist had told me why he thought it was a good idea for me to stop taking Xarelto and I told him I got the feeling my orthopedist just wanted me to go away already.

Finally, he asked me how my hip was, and I told him it felt pretty much the same as it did before the surgery, and added that I thought I might need a new orthopedist. He said labrums were notoriously finicky, then asked if I'd had an arthrogram of my hip, with contrast dye. I told him I hadn't, and he said in his experience, straight up MRIs weren't that useful for hips - and added, 'I don't mean any offense to anyone.' The funny thing is that it is his former PA, Sarah, who ordered the MRI, which I told him. I didn't say it in an obnoxious way, just an FYI way. He semi-frowned, then flipped through my records, and pulled up a page with a sticky note on it, and said, 'Yup, here it is.' Then he read the sticky note out loud to me - apparently a note he had written: Sarah - an MRI for a hip is of limited usefulness without contrast dye. LOL. OOPS. I do miss Sarah, though, even if she didn't order the dye.

At any rate, he was very prompt and very thorough, and spent about 20 minutes with me, which I really appreciate considering he was seeing me on a day when he wasn't even seeing patients, and I'm not even really his patient. I finally understood why my husband likes this guy so much. Yesterday, when I was at the pediatrician's with my daughter for her annual checkup, I was thinking how funny it is that almost all of our primary care providers are old-school doctors - as I've told my husband before, old white men. Ha. These are usually solo practitioners who still do things like give out their home phone numbers and do house calls. They don't have fancy patient portals, and when you pay them, you actually write a check out to them and send it to their physical address, and not some place in Phoenix or Chicago. I've calculated that our pediatrician must be almost the same age as my long-dead grandparents, and I dread the day when he retires (or dies), because he is just fabulous, and I love him. (The pediatrician we had before him was the same way, and he did retire.) I think part of why it's so hard for me to deal with orthopedists is because they are, like, the opposite of the old-school style I'm drawn to. It is the huge corporation versus the mom and pop corner store. Interestingly, our old pediatrician once saw me limping when I brought my daughter in and wanted to know what was wrong. At the time, I was having a lot knee pain, so he referred me to one of his orthopedist friends, a solo practitioner orthopedist. (You just don't see many of those anymore.) I remember being shocked when the orthopedist himself came out into the waiting room to get me - no nurse or MA, just him. He was fabulous, but unfortunately, like most other doctors of this type, he is retired. Now, don't get me wrong, I appreciate the modern techniques and know-how of the orthopedists in the Gigantic Orthopedic Conglomerates, and I understand that no one hopes for a long-term relationship with an orthopedist the way they might hope for a long-term relationship with a primary care provider. At the same time, I could not help but note the stark contrast between my time spent with Dr. A and the time spent with my orthopedist. While modern orthopedic techniques are indeed amazing, it seems like throwing in a little bit of old-fashioned medicine might go a long way.

Food for Thought (18 Weeks + 6 Days)

Like most of the country, we have been in a cold snap for the past week. And not just cold, but really cold, for here anyway. I've been worried about walking around on slippery sidewalks and just the cold weather in general. But... oddly enough, my hips seem to enjoy the cold weather. Maybe it's like they are being constantly iced, LOL. At any rate, they've actually been feeling quite good since I last wrote. Weird. But weird in a good way, right?

In other news, due to the cold weather, I've been spending more time on the Internet than usual, trolling random blogs related to random (and sometimes not so random) topics that are of interest to me. I'm in the midst of having what may or may not be an 'aha' moment, but is interesting to note regardless of whether it's relevant or not. In reading other hip blogs, I've noticed that several of them are by people who have hip problems due to Ehlers-Danlos syndrome (EDS), which is a connective tissue/collagen disorder. There are several types of EDS, of which the mildest is Type III - hypermobility syndrome. The reason this sticks in my mind is because my daughter has actually been diagnosed with EDS - Type III. It was a long time ago, and at the time, we had so many other things going on with her that I never really thought twice about it. In fact, I went back and read my journal from the visit that we had with the geneticist who diagnosed her, and I didn't even write about that diagnosis. And apparently we even had a follow-up with the doctor that I didn't even find worthy of a journal entry. However, a few days ago, I was cleaning out my file cabinet and came across a folder full of medical reports from when my daughter was young. The doctor wrote: Given N's personal and family history of hypermobility, I diagnosed her with Ehlers-Danlos syndrome type III, otherwise known as benign hypermobility syndrome. I believe this to be the cause of a significant portion of her motor development delay... I would like N to be seen by a pediatric neurologist to try to differentiate any hypotonia from her extreme joint hypermobility.

There are a couple reasons I didn't think much of the EDS diagnosis, one of those being that the doctor didn't make a big deal about it. The other reason is because I'm not sure I really believed her. EDS - Type III is inherited in an autosomal dominant manner, which means that either I or my husband would have to have it to pass it down. And since the question of whether either I or my husband had EDS didn't come up, I guess I just figured the doctor was just sort of making stuff up, ha ha. Now, I guess on some level I realize that you don't get to be a pediatric geneticist at a reputable research hospital if you are in the habit of making stuff up, but at the same time, there were many other concerns on the table at the time, obviously the least of which was EDS. At the same time, it's not as if I've had such awesome experiences with doctors that I believe everything they tell me, and in my experience, most people's understanding of basic science is so limited, it has made a lot of health care providers lazy about their medical knowledge, or at least how they convey that knowledge. Another consideration is that mutations can arise de novo (meaning neither my husband nor I would have to have the condition), and in fact my daughter does have a de novo chromosomal duplication. So that is always a possibility.

On the other hand, now that I think about it, it is absolutely not out of the question that I might also this condition. What actually got me thinking about it was the fact the one of the blogs I stumbled across was a teenage girl with hip pain. She had a couple of failed hip surgeries, which is what actually led to the diagnosis of EDS; because of EDS, her tendons and ligaments were too lax to keep the joint in place after surgery. It is also worth noting that because EDS is due to a collagen defect, and collagen is present throughout the body, EDS is associated with other issues, notably with the heart and the GI tract. My daughter does have some heart issues (which actually baffled the pediatric cardiologist we saw) and GI issues (which a pediatric gastroenterologist said 'to keep an eye on'), and I also have heart and GI issues I have never really pursued, just because these are hard things to pursue when you barely ever go to the doctor. LOL.

At any rate, it is some interesting food for thought.

* * * * *

FYI, here were my impressions after our first visit to the pediatric geneticist:

April 14, 2007

Our meeting with the pediatric geneticist was mostly, as I suspected it would be, uninformative. However, it was much less torturous than I expected it to be, which was a pleasant surprise. I've never been to a research hospital before, which I realize is a good thing, because most of the people there are in a sorry condition. (...)

I have to admit it was really nice, though. The waiting room was like no other waiting room I've ever been in. It was enormous, with lovely toys for kids of all ages. The only other people in the room were two grad students (I presume) trying to recruit children for a study on memory. Our appointment was at 1:00, and when the clock ticked past 1:00 and we still hadn't been called in, I was annoyed considering they had emphasized the importance of us getting there early. However, we got in around 1:10, which I suppose isn't too bad. (Our ped's view on making people wait for appointments is that it is a form of 'medical arrogance.')

At 1:10, a girl wearing jeans and a t-shirt took N in and did all the standard poking, prodding, and measuring, then we went and waited for Dr. K for another five minutes. I had no image in my mind of what a pediatric geneticist MD would be like, but I was still definitely surprised when the doctor came in. First of all, Dr. K was, like, my age (literally, as it turns out), and secondly, she was wearing a fancy Chinese-ish looking shirt and nice slacks.

And sandals. Which I wouldn't have noticed, because, after all, who notices a man's shoes? (from 'The Shawshank Redemption') But the first thing she did was apologize, saying she was feeling very self-conscious today. She went on to explain that she liked these sandals so much she bought them in both black and brown. It was dark when she got dressed, and she ended up with one black and one brown. Then she sat down on the examining table with her legs crossed, rummaged through a fancy, Chinese-ish looking handbag (she was not Chinese, but a white farm girl), and pulled out a piece of paper.

Then she commenced taking a family history, first from me, then from E. Mine took all of one minute. I told her I was healthy and had no problems other than having hemoglobin E. Then she asked about my family and I told her I had two brothers, but that we were not genetically related. And that was the end of that. Then it was E's turn. The abridged version of the medical problems in E's family took about 30 minutes. N was tearing around the room the whole time, going back and forth from me to E to me, climbing on the chairs, pulling at the blinds, playing with the sink, and pushing the doctor's chair all over. Finally she demanded to be picked up by Dr. K, which is completely different from how she is with [our normal ped] (screaming hysterically and clinging to me from the minute he walks in the door). Dr. K decided this would be a good time to start her examination.

The very first thing she noticed was her ears, which is funny because we've always joked about how her ears stick out, never realizing that there could be a medical significance. But apparently sticking out ears can be a sign of muscle weakness. Obviously some people's ears just stick out, but since neither mine nor E's do, N's ears are suspect. In fact, Dr. K said her ears are classic 'Charcot' ears, which I recognized as being 'Charcot-Marie-Tooth' disease, although I couldn't remember what it was. However, she didn't seem too concerned because apparently the rest of her did not look 'Charcot.' (Although, I have to say, once I got home and Googled Charcot-Marie-Tooth, I started to wonder.)

After further examination, she exclaimed that N was the most flexible human she had ever seen, which isn't surprising, because she's been practicing for, what, six months? LOL. We've always thought it's logical that N is flexible, because both E and I are extremely flexible, and so N is Ridiculously Flexible. Dr. K said the delays in her gross motor development could definitely be due to the extreme laxity in her joints, especially since her fine motor skills were on par with what they should be for an almost 17-month-old. She also said that her muscle tone was good, which it wouldn't be if she were hypotonic, noting that flexibility concerns the connective tissue, whereas hypotonia concerns the muscles. However, she couldn't rule out that there was something wrong with her muscularly because of her ears and her problems swallowing.

She said that N needed to be evaluated by a speech and swallowing specialist before she could make any decisions about what sort of testing, if any, we should have done. She said it could be that her swallowing problems were unrelated to the gross motor development delays; maybe they were neurological. She also said that even if she had no muscular problems, she could still benefit from physical therapy, so we should have a physical therapist work with her, too.

(...)

Overall it was a good appointment, even though it just confirmed some of the things that we've thought all along. We're going to get a PT referral from [our ped], then go back to see Dr. K in two months. At that point she'll decide if there any genetic tests we should have done. She said if she was going to have N poked, she wanted to make sure she got all the tests done that she wanted, and she didn't want to do tests just to do them, which I appreciate.

Mostly it's a relief, because I was kind of worried that a specialist might take one look at N and say, 'Oh yes, it's obviously such and such' (kind of like the Charcot ears, which would have never occurred to me). But she didn't. She didn't seem overly concerned, which is logical because I'm sure that she sees many kids in much worse shape than N, but still. She didn't seem to think she had any sort of alarming condition and didn't even bring up muscular dystrophy or spinal muscular atrophy, which are the things we were initially concerned about. In fact, she didn't even bat an eye at N's above normal CPK levels.

I'm sitting in a café right now; I'm supposed to be working on a take-home exam, but instead I just spent an hour writing this entry. Ironically, a woman who just had a baby came in. I heard her telling the girl behind the counter that the labor had been very difficult, she had ended up having an emergency hysterectomy, and her daughter (now seven weeks) was still in the hospital. However, she seemed so upbeat and factual about it as she recounted the story. Oh the trials of parenthood. You don't stay strong by choice, you stay strong because you have to.

The Weather Outside is Frightful (18 Weeks + 1 Day)

Just some facts, mostly for my own record:

• On Saturday, I rode my bike for the first time in over four months. It has been so long that I forgot which side the chain was on and rolled up my pant leg on the wrong side. I only rode about two miles total and walked about one mile total. My hip felt fine - or as fine as it ever feels.
• On Sunday, my hip started killing me - my muscles were super tight despite incessant stretching, and I also felt pain in the hip joint itself, especially when I made a concerted effort to stand with my weight distributed equally between both legs. I'm not sure if this was due to the bike riding (I can't think of why it would be) or just coincidence.
• This pain has not gone away.
• My back also hurts. A lot. I'm super bummed about this because one thing I noticed almost immediately after surgery was that my back felt really good. Of course, I wasn't walking at the time, but before surgery, as well as now, my back hurts even when I am just sitting or lying down.
• I started taking meloxicam again on Friday. I don't think it's helping. My orthopedist also gave me a script for naproxen along with the meloxicam. He said if the meloxicam didn't work then I should try the naproxen. Maybe I will.
• In trying to come up with explanations for why I suddenly feel so much worse, I've only come up with stopping the meloxicam and possibly the cortisone injection wearing off? Granted, I don't feel like the second cortisone injection actually helped, but maybe it did. Maybe I would have felt way worse without it, and now it's wearing off and I'm feeling, well, way worse.
• I fell down the stairs a few weeks ago. I mentioned that I have a fear of falling down stairs that isn't totally irrational, because I have actually fallen down stairs a few times, as have my kids. It was a pretty minor fall (hence why I never even wrote out it) - just the last two steps and I think I fell backwards. My quadriceps and my back were what hurt the next day, and the day after that, if I recall correctly. I sort of blew if off because I was actually on my way to my parents' house, and I was rushing - hence the fall. I didn't say anything to my mom about it because she is super annoying about how much she dislikes our house and how scary she thinks our stairs are, and I just didn't feel like listening to her go on and on about our stairs (not that I even disagree, but at a certain point you have to get over it). Anyway, I suppose it's possible the fall did some damage, although I doubt it. I feel like my hip should have started hurting sooner if that were the cause of my current pain, but what do I know. 
• It is snowing out. The sidewalks are very slippery. This is a little scary. 

I'm starting to lose hope that I'm actually getting better. It's not like all-out panic or anything, and like I've said, I've made friends with my pain. LOL. Nevertheless, it's somewhat deflating.