Doctors……

I’ve ranted before about my frustration of trying to get help at the rheumatologists office.

What I really needed to do was call my regular doctor and arrange a new referral to a new office, but life has been busy, and I kept putting it off.  Plus I knew that getting into a new office meant starting all over again with the several month wait to get in the first time.  So I decided to give it another try with the doctor I was seeing.

Beginning of January I used their online patient portal to message the doctor asking for more information on the decision to not prescribe a drug to slow the bone erosion in my hands.  Got a response back from nurse that the doctor was out of the office for a few days but she’d give him the message when he was back in.  That was January 4th.

I’ve never heard back from the doctor.

January 25th I sent a message to the office staff, via the online patient portal, asking them to please tell me what procedure they require to change doctors within the practice since their website states:

In order to maintain continuity of care and avoid “opinion shopping” within the practice, subsequent requests for switching doctors must be approved by the physicians involved, and in general will be denied.

so I assume they have a procedure to handle such requests.  Got an immediate response to “please call and ask for Colleen and she will discuss it with you”.  So the next day about lunch time I called and asked for Colleen.  Turns out she’s the office manager, she was in a meeting, but we can put you through to her voicemail?  Sure.  Left a message stating that I’d been told to call her for information, listed my name and number twice (my last name tends to give people fits in messages, so I always say it twice, spell it, and then make sure that my phone number is clearly stated twice so that even if my name has thrown them off they can still figure out who I am).

I still haven’t heard back from Colleen.

On their website is the following statement:

A chronic shortage of rheumatologists exists throughout the US. In most practices, waiting times for a new patient to see a rheumatologist is 2 to 6 months, and many rheumatologists struggle to meet the needs for follow-up care of existing patients. The shortage is projected to worsen over the next 20 years. The American College of Rheumatology has recommended the integration of Nurse Practitioners (NP) and Physician Assistants (PA) as an important way to address this shortage and extend the ability of qualified rheumatologists to meet the demands for specialty care within their communities. As a result, AHA has created teams wherein physicians and skillfully trained and supervised NP/PAs work in a coordinated fashion to see patients in a timely manner and reduce the risk of complications or delay. The expanded physician schedules provided by the NP/PAs have successfully reduced wait times substantially, while maintaining the capacity for personalized care.

The value of this integrated model of scheduling with the rheumatologist  and NP/PAs means that when someone calls for an appointment, a visit can be provided with the minimum of delay.

So this past Thursday I was looking at my work schedule, and feeling frustrated because the pain in my ankles has become a constant (thankfully mostly low grade, mostly) thing any time I’m on my feet.  And in addition I now have little needle stabby pains in my left ankle.  And it occurred to me that they have the above statement on their website, and hey, next Friday I’m only scheduled to work till 2pm, maybe I can get an appointment with a PA for after 2, that way I can go in AFTER a work shift and actually show them how my joints are after a day of work, and maybe they’ll listen to me then?

So I call up.  But no, that’s not an option for me.  At some point someone flagged my account.  I’m ONLY allowed to see the doctor.  And no, he doesn’t have any openings for at least a couple months.  Would you like to leave a message for him?  I took a deep breath, politely told the person on the phone that “no that’s fine thank you” and hung up.  What point is there in leaving a message when no one ever gets back to me anyway.

Am I flagged because I asked for pain meds last time I was in and so they’ve deemed me a drug seeker??

Or am I flagged because I asked for information on changing doctors??

I have decided I no longer care.  The constant low grade pain is literally depressing.  I’ve never had any real problems with actual depression, but this is getting to me.  Arthritis Health Associates (Syracuse NY) is supposed to be THE office to ask for in the area.  This is supposed to be THE best office to get care from.  THE one to ask for.  But they’ve essentially denied me help.

I’m very well aware that in the overall scheme of things there are ALOT of people out there dealing with much more pain on a daily basis.  But I’m finding myself hitting my own limits.  To top off my Thursday I ended up spending almost my entire shift outside in the cold, lifting and moving 40lb bags of (heating fuel) wood pellets.  I personally and on my own sorted two pallets at 50bags each, and helped sort another 2 pallets.  Why am I “sorting” pallets you ask?  Well, we’re down to the damaged pallets of pellets.  The pallets where there are visibly a large number of damaged and broken bags, so before we can sell them we need to tear down the pallets and pull out the damaged bags, and restack the good bags for sale.  Its Saturday morning as I type this and I still hurt.  All of my joints ache (undoubtedly “helped” by the subzero weather we’re experiencing today I’m sure) and my ankles in particular hurting even when my feet are up.  My knees are starting to follow suit.  I’m hoping my knees are just a reaction to the stiffness and pain in my ankles.

The appointment to talk to my primary care physician about a new referral to a completely different office has been scheduled.  There’s at least one other rheumatology office in Syracuse that I could find.  And it looks like that if I’m willing to travel a bit further out (and it’s looking like I may not have a choice in that) there are others in cities further out.  I don’t really want to have to see a doctor a couple hours out, but if that’s what it takes to get treatment I guess I’ll deal.

I was warned by two different people (one of them my MOTHER) that despite rheumatologists being the specialists in the field, the people who ought to know better, many of them still consider all of that sort of problem to be an “old person’s” problem.  And so it may take some trial and error to find a doctor who’d work with me.  My MOTHER (who’s approaching retirement age) told me this.  I guess I should have realized that meant it’d be hell trying to find the right doctor.  But I didn’t expect it to be this bad.  How many other “young people” (and I don’t normally consider myself to be in that category, I am after all in my mid-30’s) are struggling to find a doctor who’ll listen to them?  And how many have given up and are just dealing with the pain and frustration on their own?

2 Comments

  1. Comment by bogie:

    That sorting of pellets can’t be fun for you. I moved 68 bags of pellets from the garage into the basement yesterday morning – but I don’t have joints protesting and the garage is not only out of the wind, but warmer than outside by 10-15 degrees. It is horrible that you are having such a difficult time finding a doctor that will work with/for you.

    30’s is “young” as far as something like that is, just like 40’s is young for heart problems (being in my mid 50’s – I can attest to you being young – LOL). However, that does not excuse doctor’s not paying attention to symptoms and issues regardless of the patient’s age – especially if it runs in the family.

    I now someone who had multiple heart attacks at mid 40 and kept being told it was bronchitis until she went to the hospital and had an emergency triple by-pass. Her family history said that her mother and mother’s siblings had all had early heart attacks, but doctor ignored that.

    Anyway, I hope you find a doctor that takes you seriously and works with you!

    • Comment by Ruth:

      If it wasn’t so cold I’d not mind so much, but the cold turns it from a really annoying job (that should have been done ages ago but no one bothered to alot hours to do it) to one thats outright frustrating and painfull.

      Hah, I know, it depends on your POV as to young. But then I look at today’s teenagers and feel so old……

      Having a doctor who’ll listen to what you’re saying is SO IMPORTANT, even if you don’t have a major problem. And yup, first thing about of my mouth at the first appointment with the rheumatologist was that my mother had been recently diagnosed with one of the nastier immune disorders, and her sister’s blood work came back with the result of “well, you probably have an immune disorder, but we can’t figure out which one…”. But then MY bloodwork came back normal, which complicates things, but I guess that means I’m not special enough to need attention? I donno……