Posts Tagged ‘doctors’

Pleasantly Surprised

Note to self: whenever possible, get Rheum appointments *early* in the day, my doc is much happier in the mornings!

So, I have chronicled here my (sometimes more than) slightly bumpy relationship with my rheumatologist. There have been missed and mis-communications and rushed appointments. This week I could only get a midday appointment, and it made all the difference in the world! He was much less rushed and more chatty. He started out by saying he did NOT want to increase my MTX dose yet, told me to STOP focusing on my weight and just keep up the exercise and that weight will follow, and recommended acupuncture in addition to massage.

If this is bizzarro-world, I like it!

He is also reviewing a clinical trial coming up in January that I may qualify for. I don’t know anything about it yet, so I’ll wait for more info. He also recommended an online source I have been poking around. Overall, it was the most positive appointment we’ve had. He gave me some info on better managing my next flare, and we’re going to try a different muscle relaxant to handle the muscle spasms/cramps.

I am always the first to admit when I am wrong, and I do not think that I was wrong to be upset by some of the issues we’ve had, but I am very happy to learn that this isn’t a constant pattern. Sadly, later appointments are still better for me (unless I take a half day off from work) so I won’t have this opportunity very often, but it makes me feel better about our relationship.

All that, and I am exactly the same as I was six weeks ago (actually, slightly worse), despite my determination to show improvement. Today is especially stiff and achy, but I feel less stressed about it- having a doctor who backs me up makes a HUGE difference in my attitude. I’ve received a lot of good advice lately, I just need to practice applying it. I’m working on my new mantra:

Small steps. Enjoy the good times. Focus on today. It’s okay to whine, then stop.

Any suggestions on other phrases I should add?

Images from We Heart It


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Where I Was

The latest ChronicBabe article is on Trusting Your Gut. This is particularly timely for me, since my latest doctor tug-of-war has been over my thyroid levels. After almost three years my TSH is steadily in the range preferred by my endo. This is lower than the preferred range for the lab used by my GP, who prescribed a change in dosage. I had several very stressful days while labs and phonecalls were sent back and forth to determine who I should listen to and what I should do. This doesn’t sound like much, unless you understand what life was like before this current golden age of stability.

In 2006 I started to suffer from extreme fatigue. Other than work, I did nothing. I often was in bed by 8 pm because I was not physically capable of staying up. Most of my socialising was over the computer, and even then I was exhausted, had little focus, and sometimes even sitting at a desk was too much. My skin was painfully dry despite hydrating lotions, my hair was falling out in ever-increasing amounts, and I had no eyebrows to speak of. I gained 30 lbs. in six months. I first attributed this to moving from an active job (Pre-K 4 teacher) to a desk job, but my fatigue increased rather than decreasing. I was terribly constipated and ached all the time. I did not sleep well, and even 10 or 11 hours of sleep left me exhausted. Despite the joy of getting back into my chosen career and the relief that increased income brings, I was deeply depressed. Once my new benefits began I went in for a physical, but it took months before the test that finally flagged my thyroid dysfunction.

Jump to today. Despite the RA, I am a thousand times better than I was. Getting my thyroid balanced was a protracted fight with many ups and downs, but I am back to paying someone to wax my bushy brows and I no longer outshed my longhaired cat. My anemia is controlled, and I no longer physically crash at 3 pm. The fact that my thyroid is under control is a point of pride for me, when so many other aspects of my life and health are still beyond my control.

So when someone tries to fart around with my thyroid treatment, I get very antsy. See the Great Freak Out of 2008 when my pharmacy tried to slip me generics. Note the Explosion of Fear in 2009 when I had to change another medication that impacts my thyroid.

I survived these bumps in the road, but the main point is: what I have right now WORKS. It took a long time to get here, and anything that threatens this delicate balance had better stand up to protracted and exacting scrutiny. But I also distinctly felt that I was “tattling” on my doctor when I went for a second opinion on the prescription. I know that it is my right as a patient and only sound common sense, but there is that insidious grain of guilt, like going to your stylist after you dyed your hair yourself: they may not say anything, but you KNOW that they know. I’m trying very hard to get over this inhibition- I know that my treatment works and I’m not going to mess with it (“if it’s not broke don’t fix it”), but it doesn’t stop me from feeling nervous about challenging an authority figure.

Some of this is coming to terms with the fact that I am a much more informed patient than when all this began. I know about my conditions and how my body responds to those conditions much better than I did three years ago. At the same time, there is still so much that I don’t know about my RA and being able to rely on the effectiveness of my current thyroid treatment is my security blanket. I think what has upset me most about the doctoral back-and-forth is that it shook my confidence in my own experience. I rely on these people to know the things that I don’t- when they’re not sure what to do, I feel lost.

As an aside, one of the article suggestions Zemanta gave me for this post made me angry: it’s a “cure” for hypothyroidism. I’ll save THAT rant for another post…

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Lots of thoughts running around inside my head. Right now the “to-do” and “want-to-do” lists are astronomical and work is very busy (although somewhat settled down from yesterday).

My appointment with my GP yesterday was pretty good- I don’t have any new big issues, so it was relatively brief. We talked a bit about how this blog and online communities have been helping my mental health, and there was no judgement that I haven’t followed up with either of the therapists.

We talked a bit about my allergies and migraines, and I’m starting a slightly different migraine treatment scale since some treatments are now unavailable to me due to the MTX. Reminder to self: stop by pharmacy today or tomorrow for prescription, daily allergy pills, and iron.

We also talked about the fatigue, and I had gobs of blood drawn as usual. I hadn’t made a note that I was supposed to fast and they didn’t remind me when they called, so my cholesterol report may be a bit off. We’ll see how it goes. I have lost no weight, but then again, I haven’t gained any either, which I take as a win.

I’m currently at that “let’s see how things go” stage of a new treatment. I’m hoping that a few more weeks will have a stronger effect once it has time to build up in my system, but my MTX dose is very, very low. I have been trying to cut back on the daily arthritis pills, but really can’t, which is a bit frustrating. My goal for this week is to get the front room set up enough so that I can start doing yoga there, which should help with some of the stiffness and soreness. I found the weights, but have no idea where my yoga dvd or mat is- oy.

Image from We Heart It

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So, I have been looking for a new rheumatologist who is closer to home. With the move, my current rheumatologist is farther away through heavier traffic, which is more than I can drive if I’m not feeling well. I’ve already chronicled the fact that my current GP has not been responding to e-mail and their limited hours. Well, I finally got a response. They’d prefer that I stay with my current doctor (are you going to drive me to and from my appointments? No? Well, then…), but they gave me two other names.

Both of whom are less than 15 minutes from where I used to live.

I’m not particularly thrilled with this revelation. I was driving a half hour each way along a toll road when I could have gone to someone much closer? Not happy at all. I’m not sure what’s going on, but my relationship with my doctors is suddenly declining very swiftly, and I’m now thinking about finding a new GP closer to home. I’m moderately furious about this, especially since I have been having trouble connecting with my current rheumatologist as well.

After much Google-mapping, it looks like the four closest rheumatologists are all approximately the same commute (with the closest doctor having the worst reviews- a little extra driving is better than someone *worse* than what I have now). I am rather torn. I may go to my current rheumy one more time to see how the new route works, but if our relationship does not improve then I will call one of the other doctors who has excellent patient-relationship reviews. We’ll see.

*Sigh* This stuff just makes me tired. As if trying to manage these health issues isn’t hard enough, why do people need to make everything else more difficult?

Image from We Heart It

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So. Annoyed.

I’m actually really glad that I have already started looking for a new doctor, because this last visit was fairly insulting. First he tried to call me out on how my stiffness isn’t lasting all day the way I reported six weeks ago. “Uh, that’s because you told me to take the OTC arthritis medication daily and I have been.” Then, I pointed out that my gastro issues are a known side effect of my current meds. And he agreed. WTF!?! I am so mad that I went through a bunch of tests and another prescription for this. If he had said this two months ago, I would have been fine and dealt with it, but right now I’m furious. Then, while we’re discussion this major change in my treatment (yes, I’m starting MTX) he actually starts BACKING OUT THE DOOR to go to the next patient. Seriously! We barely spoke for five minutes! Yes, I know he’s very busy and was behind schedule, but I am done. If I hadn’t already been looking for a new doctor, I sure would be now. What a terrific job of making my health concerns seem completely inconsequential, guy. If you can’t even spare five minutes for a patient then screw it- I’m going somewhere else.

I am incensed and frustrated and unhappy that I have to start this new treatment, even if it is necessary (and, sadly, it really is).

But I’m really glad I never gave this doctor a link to my blog.  😐

Update: still mad. And when I asked about the tremors in my hands, all I got was “that’s not a common side effect”. Well, is it an uncommon one? Is it just from muscle fatigue? Could you at least PRETEND to care or be curious?!

But hey, there’s good news. My anemia is doing fine. Yay.

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Incredibly frustrated with doctors and diagnoses today. I finally got my lab results and am having one of those moments when what one doctor thinks is fine would probably upset one of my other doctors. Also, my doctors do not seem to be communicating with each other particularly well at the moment, so I am trying to pass info back and forth and feel like the little kid trying to mediate between cranky grown-ups. All this on top of filling out reams of paperwork for my new doctor before my appointment Monday, and just being tired and frustrated with doctors and tests in general. My cholesterol is still through the roof, and while I could be doing more to manage it, I’m almost getting to the point that I want to say “just give me the damn pill” and get it over with. I can’t diet too much more than I already am, and my body just isn’t letting me exercise. I’m so frustrated I could cry.

On top of all this I am questioning the insides of my head again. I’ve now had a second doctor offer me something to help me rest. I’m very resistant to treating my sleep issues with prescriptions. My hypothyroidism messes up my sleep. The medication I take for my hypothyroidism messes up my sleep. My RA messes up my sleep. The medication I take for my RA messes up my sleep. See the conflict here? Plus, I have a family member who became dependent on sleep aids in order to sleep at all, and I’m afraid of going that route. At the same time, having a few restful nights of sleep would probably help all of my issues enormously. I keep hoping that getting other things under control will help me rest better, but I’m not sure that I can wait indefinitely for this to resolve itself. I already follow a number of guidlines to help minimize insomnia which do help, but even when I do sleep I wake up exhausted.

I am just having a cranky, frustrating day. In good news, my pain is much more manageable than it has been the last few days. In bad news the nosebleeds are back and I’m off the nasal spray for two more weeks. It is cold again and I am tired. Really looking forward to seeing my friends this weekend- I need the downtime.

Image from We Heart It.

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You’ve probably been here. You have a prescription. It’s good for x number of months. At the end of that time you meet with the doctor again, and he refills the prescription. You truck on over to your local neighbourhood pharmacy (or have the doctor fax the prescription). The pharmacy fills the prescription, and you’re good for the next x number of months. Lather, rinse, repeat. Sounds easy, right?

Why, oh why, can’t it actually work that way?!

I have a good relationship with my pharmacy. Over the years we’ve had to work out a few kinks, but most of the time things run smoothly. Throw a new doctor or prescription into the mix, however, and there’s always a visit from the cock-up fairy until they get used to the change. In this case, there was a minor issue in that neither I nor my doctor caught onto the math.

You see, my prescription was good for 60 days. Two months, right? Well, not in September and October according to that little rhyme we all learned in school but never remember until you’re staring into an empty bottle and can’t get a script and you don’t see your doctor for another two days and apparently the pharmacy is so very busy that they can’t send a fax to your doctor even though you called them days ago and, and, and…


Well, it could certainly have been worse- if this happened with my thyroid medication I would be in bad shape by now, but I’ve discovered that I am hypersensitive when it comes to my medications. Some of it is my mild OCD- you screw with my schedule and I go a little ballistic (mostly internally- I’m too polite to show more than Mild Frustration with maybe some Vague Disappointment thrown in for good measure. I like the pharmacy staff far too much and people give them a terrible time already. Besides, I see them four times a month, I don’t want to be labelled as “THAT woman”.)

But I digress. Extensively.

It’s just that when you rely on medications for your daily wellness, anything that interferes with that schedule is Compromising Your Health. My autoimmune system does a good enough job of that on its own, thanksverymuch- I really don’t need any outside help.


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