Keep On, Keepin’ On

I had a rheumy appointment yesterday, a simple follow-up appointment.  I guess I’ll be having lots of those from here on out.

Anyway, things looked okay.  No weight gain from the prednisone (yay!), blood pressure holding steady.  The “squeeze” test showed a lot less pain in my hands, which was great.  Still some pain in my feet and my arms during the test, but overall much improved. So the basic message from Dr. K was to keep doing what we’re doing.

A couple of things stood out for me during out visit.  First, I have to start weaning off the prednisone.  Which is good.  But also bad.  It’s going to suck, and I know it’s going to suck, so I don’t want to do it.  At the same time, I would love to be off of it.  So after my next MTX dose, I am going to go down to a lower dose.  Fun!

I find Dr. K’s approach to things  really interesting.  She phrases things like this “you can lower your dose.”  Not “you should” but “you can”.  My partner says it’s because she wants the patient to be part of the treatment, and I think he’s right.  Ultimately when I lower my prednisone is up to me, in Dr. K’s mind.  I like that, knowing that I have some choices.  At the same time, I would love there to be one right way to do things, one perfect path that will make me feel better.  I guess that’s the difference between treating curable illnesses and chronic (incurable) ones.

The other big stand out with Dr. K was a conversation we had about managing multiple diseases.  Our big challenge, she said, would to be to make sure that we are treating each disease correctly, to make sure that we can identify what is causing each kind of pain.  So when I go down on the prednisone, an increase in back pain is not reason to put the dosage back up, nor will my back pain improve with the MTX.  It’s a separate entity.  I knew already that this was a challenge, and that it was important for me to pay attention to my body so I can decipher what is really flaring up or improving, but it was nice to know that she’s paying attention to this.  It’s almost as if she is treating me as three separate, but entwined patients, in order to find the right level of treatment for each problem.

So for now, I am going to keep on, keepin’ on.  And maybe we’ll get somewhere on this path!

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When Physical Therapy Isn’t Therapeutic

It is safe to say that my physical therapy office is not going to be on my team.

I liked my original physical therapist (K) at my first visit.  She seemed helpful, interested in my well-being, ready to help me gain some strength and eliminate some of my pain.  I was pretty optimistic after that first visit, honestly. Which is maybe why I’m bummed now.

At second visit, I liked K a bit less.  She spent most of her time we were together doing paperwork while I was on the tens unit or on the recumbent elliptical (which is a good machine for people like me).  But we did a few strengthening exercises and she sent me home with homework (three of the exercises twice a day ten times each).

So, today, third visit, I am not having a good day, pain-wise.  I didn’t want to go.  Couldn’t find convenient parking.  Walk in and K says, “I can’t see you today, so A will see you.”  Fine.

But A doesn’t know anything about me.  First few minutes of session is her asking me questions I answered on first visit.  Ok, fine.  I can deal with that, I guess.  She puts me on a bike-type machine which was much less friendly to my joints.  Fine. I can deal, I guess.

But here’s where I start to get pissed.  She says “So K went over bio-mechanics with you last time, right?”  Me: “What do you mean?”  A: “Like the right way to stand, the best way to sleep, ways to get up.”  Me: “No.  But I would really like to know those things.”

Evidently K’s notes indicated we covered those things.  We didn’t.  I went to physical therapy partly for that information, and I am so upset that my care is being compromised because K was lazy and took the easy way out by writing that she had covered something she hadn’t.   Lucky for me, A did go over some of those things (unfortunately no new information).  A also add some abdominal exercises to my routine, which I am happy about.

But then at the end, I am confused again.  She recommended I do my exercises “Maybe every other day.”  K told me twice a day.  Which is it?

Physical therapy’s purpose is to help me, right?  But how is helping to get inconsistent care?  To get inconsistent information?  To get therapist’s who don’t actually give a shit about my outcomes?

Arg.

I have three sessions left that my insurance will cover.  After that, I guess I need to consider whether I can afford to pay for my own physical therapy at a decent therapist.

Arg again!

Building a Team

One of the first books I read about chronic illness, You Don’t Look Sick by Joy Selak and Dr. Steven Overman, talked a bit about building a health team of doctors you feel like are really on your team.  These aren’t just doctors you go to because they were the first in the phonebook or because your insurance company made you.  They are doctors you feel have your best interests at heart and who really get what you want in your journey.  At the time that I read that, I had had exactly two doctors, both of whom I liked just fine, and I wasn’t really thinking about needing an entire team to help me.

But since then, I have had been to a few more doctors.  I have had a whole lot of conversations with various people.  I have expanded my care.  And I am realizing that I do, in fact, have a team behind me.  My team includes:

My Primary Care doc, Dr. W, who didn’t blink when I went in and said at the end of an appointment for something else, “oh and I have been really feeling awful for several months.  Very tired, weak; everything is hard to do.”  Instead, she ordered a ton of labs and promptly referred to me to an excellent rheumatologist.

Which brings me to Dr K, my rheumy.  I like her, though she isn’t warm and fuzzy.  There’s something about the way she doesn’t think you’re odd when you explain a symptom, the way she even remembers the phrasing (“my arms feel heavy”) to ask you about it later.  I also very much like that she and her staff never seem to hurry through an appointment, and yet never keep you waiting for long.

Next up, and this one seems silly probably, is the entire staff at the CDI (Center for Diagnostic Imaging) that is located within my rheumy’s building.  I have now been there for two ct’s and several xrays, and every person there is friendly, knowledgeable and helpful.  They explain everything they are doing, and truly have the patient’s best interests at heart. I will have all of my imaging done there, if I can help it.

Even though he’s an odd duck, I also have to add my shrink to the mix.  Dr. A always tells me weird stories about articles he read in journals, or books he’s read.  But he also explains his clinical outlook, and he doesn’t dole out meds like candy, the way so many other psychiatrists do.  I like that about him.

I also feel like my team is made up of some non-doctor types.  My pharmacist, Michelle, who knows me by name, remembers all of my medications and diseases, and always asks me how it’s going.  There’s my acupuncturist, the newest addition to my team, who isn’t intimidated by high levels or multiple problems.  She truly loves what she does and it has made me a believer in acupuncture, as a healing mechanism (even if it doesn’t work for me- jury is still out).   There’s Jean, the nurse at my rheumy’s office.  I have never met Jean because she’s not the nurse who helps with patients in the office, but every email and every phone call is routed through Jean, who always answers promptly and who is always supportive and helpful.   I also feel like I need to add my best friend L to my team, not just because she’s my best friend, but because she is so knowledgeable about all of the stuff I have been going through because of her own health journey; she has also been the one to encourage me to try alternative treatments and who found me my acupuncturist.  L is on my team because she gets how I feel without having any doubts, because she helps me figure out ways to feel better.  I couldn’t ask for a better friend (or team member!).

NOT on my health care team: the urologist who was so disorganized and so incredibly unhelpful at my own appointment with him and who has never called me back with test results over a month later (I got the results on my own, thank you very much).  But that reminds me, I need to find a new urologist!  *Sigh*

So far, I feel pretty good about the team I assembling.  I hadn’t thought at the beginning of this that I would need a whole team, but I really do.  Today, I am hoping to add a physical therapist to the mix, but we’ll see how I like them.  The truth is, these diseases are hard; living with chronic pain is hard.  We can’t do it alone, and we shouldn’t try.  I have been so lucky to have found a good team without too much effort, but I know it won’t always be this easy.  I know it isn’t that easy for most people.  But, I feel so strongly that it is necessary that all I can really say to people who don’t have a good team is keep trying!  It’s worth it.  Because we all need to know that we have a group of people in our corner, people who don’t just have good attitudes but who genuinely want us to be well and don’t feel like there is only one right way to get there. We need doctors, and health providers, who have open-minds and a willingness to try new things.  We need people who will answer our questions honestly, who will give us information and allow us to make our own decisions (when possible, of course).

I have been feeling pretty blue lately, pretty discouraged with how crappy my body feels all the time.  But I do know, at the bottom of all that worry and fear and sadness, that I have a team who will help me feel better eventually.  I just have to stick with them and be patient.  I just have to do my part on the team, hard as it may be.

The Fill-In Pharmacist

All my worries about the new doctor yesterday were totally unfounded.  Visit was short, totally productive and without any problems at all.

But….I was reminded yesterday: new pharmacists can be as bad as new doctors.

Yesterday I got the official ok to start Methotrexate, so dr’s office called it in to local pharmacy, along with folic acid.  I’ll skip the part of the story with missing scripts and having to get dr’s office involved a second time.  That part is minor compared to the rest.

My normal pharmacist is on vacation.  I love her.  She knows me by name, remembers my meds, offers great advice.  Her fill in- total opposite.

I arrive to pick up the MTX, and it isn’t ready yet.  So I wait a few minutes.  Finally, clerk brings it over and starts to ring me up.

Clerk: You’ve taken this before, right?

Me: No, not at all.

Clerk: Calls Fill-in Pharmacist over

Fill In Pharmacist: Your doctor gave you instructions for this right?

Me: I think so

Fill In: Well, the instructions are really specific.  Let me read them to you.

Me: Ok

Fill In: Ok. (reads from label) “Take 4 tablets once a week”

Me: Right

Fill In: Well, that’s pretty much it.  Have a good day.

Me: Stands in stunned silence

I have gotten better medication counseling for refill scripts.  I have gotten better medication counseling for pretty much every other medication I have ever taken.  And this drug is not exactly a light weight.  We aren’t talking about a vitamin here, or extra strength tylenol.

MTX is a chemo drug given in low doses for RA.  The product info sheet was written in teeny tiny font in order to fit all the info on there (one piece of info included that patients should wear id bracelets- I wonder if this is true).

I am so angry at this pharmacist.  Sure, I know about this medication.  Obviously, I know more than he does.  I know to call the doctor if m side effects are too bad (and they very well may be); I know to call the doctor if I get an infection because I can’t have one while on MTX; I know I have to go in for regular labs to monitor my liver function while I take this med.  These are things pharmacist should be telling patients.  It is his job not to just hand out pills, but to make sure they are taken properly.  Had I not done my research and been as knowledgeable as I am, I would think the only important info is that I take four pills once a week.  I feel so bad for all the people who go into pick up meds without doing their own research- how many people has he screwed over with this kind of approach?

That is unacceptable.

Needless to say, I will be lodging a complaint when my normal pharmacist returns.

And on a side note: I start MTX tonight.  Pretty freaked out, to be honest. But, we’ll see…

Doctor/Patient Relationships

I have to see a dermatologist tomorrow.  My first visit with this particular doctor, and I’m nervous.  I hate first appointments.  I am particularly worried about this appointment because I have this weird….thing that my rheumy couldn’t name.  The internet yielded nothing.  So I am going into this appointment with no clue what I may hear.  I don’t like it.

Last week, I read a great blog about first dr appointments: Ambivalence.  That blog led me to a terrific blog by a doctor who wrote about dealing with patients who have chronic illness: A Letter to Patients with Chronic Disease which gave me a whole new appreciation for doctors who deal with people like me.

These blogs raise good questions.

What is the best way to start a dr/patient relationship?  How much information should you reveal at first visit?  Should you go into an appointment with ideas about what’s wrong or is it better to go in totally ignorant?  Is it a good idea to come in with a long list of questions or a short list?  How much patience should we have with our doctors and when is it time to shop around?

As patients with chronic illnesses we are too often at the mercy of our doctors.  Many of us require pain medications, but there are docs out there reluctant to prescribe them.  Many of us have strange illnesses that require patience and lots of detective work, but there are docs out there who see the first negative test as an absolute negative.  Many of us don’t react well to commonly prescribed meds, but there are docs out there who don’t want to try six more to see which works better.  So, as patients, we must either subject ourselves to the whims of our doctors, or we must keep looking, which is a pain in itself.

I have been very fortunate with my rheumy, who has been great with questions and with giving information.  Who has done the detective work and not cast me aside because of negative results.  But my urologist is another story.  He and his nurse were disorganized and not particularly helpful.  I saw him three weeks ago and have not heard back from him; instead I got my results from CDI, who ran the ct scan.   I know I should follow-up with him to see what we do next, but frankly, I don’t want to.

So, it will be interesting to see how things go tomorrow with the dermatologist.  For once, I go in with absolutely no idea what I may hear.   But hopefully, she’s a good detective.  I mean, doctor.