rheumatologist Archives - Not Standing Stills Disease

The latest from the rheumy

Posted on August 3, 2016December 5, 2021 by Grayson

The Friday before Oreo passed away, I had a big rheumy appointment. I mean, I thought it was going to be big at least.

Appts with colds = ick btw

Maybe even Michael Bay explosions big.

In 2010, I was in the worst flare I’ve ever experienced. My sed rate has certainly had its ups and downs – as a child, I recall closer to 100 but, unfortunately, my medical records were murdered, so…

I thought that we might have the discussion of the ‘R-word’ at my appointment – remission. But, since my fibromyalgia is still flaring like a bitch, that was the subject of our conversation instead. My fibro is heavily affecting my neck, shoulders, and upper back. Since I am struggling to get relief, we are going to try trigger point injections and acupuncture which, thankfully, are offered under my insurance.

I’m nervous at the prospect of the trigger point injections as I know others, like my sweet friend Kenzie, have had them and did not necessarily enjoy the process. We handle pain well, but damn y’all, I’m nervous. I am excited at the prospect of pain relief at least.

My appointment to even be evaluated isn’t until after the JA Conference East in Philly so the latter half of August. I think I’ll try to get a massage before that to see if that will help for while I travel to and from Philly. Luckily, T will be coming with me so that should help with some things. After all, our anniversary is the Tuesday after the conference, so it works.

I really want to get to the point where I’m not sitting here concerned about my fibro interfering with my life like it has lately. I want to feel as amazing as my labs look.

A holy cow of a rheumy update

Posted on February 16, 2016December 5, 2021 by Grayson

I saw my rheumatologist on Friday morning.

Last week, I cried in my office. In the year I’ve been seeing my rheumy, this is what my sed rate has done:

My doc sent me this note along with the lab results: “SO impressive to see from 8 months ago how wonderful your labs are now.”

And she hasn’t even seen it from the beginning…

From Fri at 8:45 am –

I’m about to leave work to backtrack towards my house and head to my appointment. I’m nervous, especially as I realized yesterday I’m in my first fibro flare where Arthur has not joined in.

It’s weird.

We agreed that I’m in a fibro flare… and that I should stop swim class.

It’s too much right now.

BUT everything else is SO AMAZING!

I showed my doc the graph above and she was just astonished. I don’t know what all is factoring into me feeling so well, but we both agreed that this is something that was SO needed.

No mention of the R-word yet – I don’t think either of us want to go there too soon.

Now I can get to truly helping others the best that I can.

Still unpacking from Thursday’s rheum appt

Posted on February 2, 2015December 6, 2021 by Grayson

I feel like I’m still unpacking from my rheumatologist appointment on Thursday.

She wants to me live where stairs are not a thing.

She says yoga is right out for now, because it’s balancing your own body weight and right now my joints and muscles can’t handle it. Instead, back to the water with me. Or Tai Chi, but let’s face it – I do not have the balance for that.

I’m frustrated because I knew I was not doing awesomely, but I didn’t realize I was doing so poorly I guess? It’s winter in Wisconsin, so I’m generally worse off. Maybe that’s part of it.

I’m starting to look at cars because taking the bus is getting to be a lot. It’s really not that bad, but when you throw on top the idea that we’re looking at hip surgery? People don’t even get up for younger gals with canes… will they do so with crutches? I have my doubts sadly.

Speaking of, I’ve called to see where in the triage process I am with the surgeon. He got back to clinic last week, so he should be making a decision on my case. From the docs I work with, it sounds like the normal process is to inject the hip first to see if that eases the pain, so we’ll see what happens. I’m guessing that would be a part of the surgical consult.

I helped a patient this morning talk about joint injections, but I’ve never had one. I’m not excited about it. But I also recognize that they serve a purpose.

Oy.

I honestly don’t want to think anymore about being sick today. It’s a bummer.

If you want to learn more about the #ChronicLife, go check out that tag on Twitter. Hurt Blogger (aka Britt) is live blogging her illness adventures today and tomorrow, and a bunch of us have joined in as well.

New rheumatologist = amazing

Posted on January 29, 2015December 6, 2021 by Grayson

I’m feeling a bit like this handsome guy today. This morning was my appointment with my new rheumatologist. I’m happy to say that it went really well.

First of all, they actually had comfortable seating. I thought that was important to me before, but oh man the torn labrum makes it a necessity even more. They also had a wall full of pamphlets from the Arthritis Foundation on just about every autoimmune arthritis type.

The exam room was gorgeous. Two whole walls of windows and beautiful furnishings. The exam bed was an older one, but a really good one.

I spent a good bit of time in the exam room before my new doc came in, but I was okay with that since it gave me time to study up on my bones…

And them muscle butts.

Doc came in. She and I talked a bit about what was going on with me currently first – bad joints, rashes, Raynaud’s, etc. We went over what is hard for me to do – and what I really like to do but have a hard time with like cook or play with our piggies. I mentioned my situation growing up – didn’t mention abuse per se but mentioned neglect.

She asked how my anxiety and depression were doing, which was good but also caught me off guard. I hadn’t really thought about it. My anxiety is definitely getting better. The depression is still there in reality but far lesser than before. Mentally I feel like I’m in a good place.

Thank you serotonin!

We talked a bit about my frustrations with my current rheumy situation. I mentioned how frustrating it is to have a doc use step/fail first therapy and treating me for general JA instead of going right for the meds to help SJIA. She agreed and was frustrated for me. I went over a history of my meds.

We talked about how her office operates. It’s her, her nurse (whom she gives more duties than normal RNs), and her assistant – that’s it! No talking to 20 people to get an answer. No chances of my paperwork being lost – especially because she sits down and does it right away! Her medical philosophy is all about being a partner in care and getting you to YOUR goals. She’s very into engaged patients, which makes me so excited.

We discussed remission as the goal. It may not be possible – I’ll be real there – but I’m excited to try. She also brought up new ideas on when a drug is failing a patient (her words even!!). I went over drugs I would consider trying again like methotrexate and those I do not want to do again (ARAVA YOU JERK).

She gave me a nice and thorough physical exam, though she stayed away from checking ROM on my hips thank goodness.

Then her nurse came in and met with me as doc was filling out my FMLA paperwork. We talked about labs and resources they have like their amazing occupational therapy department.

I have labs at the end of next week and we can look at how to proceed. One of her goals is to get me off any meds I don’t need – part of the remission goal is testing that when things are better. I’ve already basically stopped taking my muscle relaxer each night. It helps but makes me so groggy that I have a hard time getting up. Instead I’ll only take them when my back or other muscular issues are acting up.

One of the reasons I like this doc, too, is that she is active with our local Arthritis Foundation chapter. I happened to meet with a couple of AF people today, too, to get an update on federal and state goals for the year. It was interesting and eye opening. I’m ready to do more with them on a local level, so having them touch base was nice.

They also told me that the Arthritis Introspective Conference this year is in Milwaukee, just a short drive away! I’m going to look at what I can do to be more involved there this year as well. So hey, come hang out!

You can’t see super well but all three piggies are in here!

Right now I’m ready for a night filled with delicious pizza and cute guinea pigs!

New rheumatologist: What would you bring up?

Posted on January 25, 2015December 6, 2021 by Grayson

It’s not that I hate my old doc, but it’s very obvious that the office is too busy to really dedicate time to so many patients. It also shows in their lack of attention to detail (refill issues, lab results taking a week to get back to me instead of the three days, etc). They’re very sweet people and I love that the rheumy teaches, but the teaching is getting in the way of my care at this point. I gotta do what’s best for me and peace out.

I see my new rheumy Thursday morning which means it’s time for me to start obsessing as I usually do before appointments, about what I’m going to say in the short time I see the doc. This time, I’m scheduled for a whole hour, which will be longer than I’ve sat with one of my docs in a long time.

I obviously am going to have to bring up the fact that I don’t have any records from my childhood, since I didn’t get to see doctors. I want to bring up frustrations with my current rheumy team and the fact that they’re not treating me for SJIA/Still’s. I want to start talking about other meds. Cimzia isn’t awful, but I’ve also not done my shot for like a month and not felt any real difference other than not feeling quite as flu-like (I’ll do it tonight).

I’m sure that part of the issue with that too though is the torn labrum. I would think it is distracting my body more, even with the pain lesser than it was a month ago when this all started. It still is limiting my activity and causing pain. My quality of life is still lesser than it should be. Perhaps I can discuss surgery and thoughts about that with the new doc. Even though it’s feeling better, the fact that it’s still causing problems AND has always been an awful joint for me makes me feel like surgery would be best.

I also am going to start working on getting my records so that I can go through and correct them… and so I can have my x-rays and scans for fun decorations.

I have problems.

But seriously though, how cool is it to have pictures essentially of your insides, of what makes you move and function?

Anyway.

What are some things that you’ve brought up to new specialists? What is the most important to bring up in your short time? Is listing your expectations a good idea, or too bossy?

Frustrations with my current rheumatologist

Posted on January 23, 2015December 6, 2021 by Grayson

I’m a little confused here…

If every time I see you we discuss how I have Systemic JIA/Still’s, why do y’all have me listed as having polyarticular? My SJIA is definitely polyarticular in nature, but um…

Do y’all not listen at all to your patient? And to the (limited) records? And symptoms?

I just, um…

I hope I really like this new rheumy I’ll be seeing because I honestly don’t want to go back to this office.

Before I got more into the empowered patient movement, I would probably have let this slide, but honestly not cool.

My previous rheumatologist to these guys put many things in my record inaccurately.

Does anyone know what to do to remedy all this?

MRI Fun, Part Deux

Posted on January 15, 2015December 7, 2021 by Grayson

So it took my rheumatologist A WEEK to get back to me with my MRI results… Any test in the health system I use (and now work at, so I know what’s up too) is supposed to be processed and presented to the patient within three days. Not that it ever happens with this doc…

That’s beside the point (kind of at least).

Anyway, I do NOT have avascular necrosis (AVN). Hooray!

I do, though, have a tear in my labrum.

This explains why wearing underwear hurts like a bitttcchhhhh.

She gave me the choice between PT and surgery. Seeing as I work with a couple of sports med docs over here in peds, I opted to ask for the surgical consult and talk it over with one of them… who suggested that surgery is THE way to go… as have the handful of other patients that contacted me yesterday. One reason for that is that there could be outlying issues with my hip that have caused the tear (as is very common with autoimmune arthritis patients) and they can see that when they go in.

My rheumy was not happy with my decision, but it’s also not her body. And, given the fact that they have my diagnosis listed incorrectly in the computer among other issues, I don’t necessarily care as much what she thinks.

This surgery is a lot less frightening than the AVN one for a lot of reasons, but one being that it is really minimally invasive. It’ll probably be a while before I can get in, but I think this is the way to go. My left hip has always been a problem joint for me and I really believe that this can help clear up a lot of those problems. At the very least, it’ll help me eventually get off these narcotics I’ve been taking. I have to say, though, Zohydro is amazing. I can function on them mentally, whereas when I’ve been on the oxy drugs in the past, I just want to sleep and throw up. I’m back to feeling like an intelligent person, and that at least has been very helpful.

I probably would not have gotten Zohydro if it weren’t for a very kind doctor that I saw at urgent care the Sunday after this pain started (Dec 21). He really paid attention to my allergies and wanted to give me something I would have a lower chance of reacting poorly to. He really took the time to go through everything with me, came over to the pharmacy with us, etc. And he was a newer doc! Younger docs tend to be more afraid of prescribing pain pills, so I was glad to see that he wasn’t. Getting them filled at Walgreens was extremely easy as well and that was great because I was in so much pain and so tired. I honestly feel very blessed for how things went down that day.

When my rheumy refilled my Zohydro, though, the pharmacist at Walgreens was a total bitch. She asked questions in a way that didn’t make sense to me, blew off my questions – even interrupting me as I was asking them, and had me stand up at the counter for 15 minutes with my cane while I was visibly in pain. She treated me like a pill seeker, and I remembered why I normally don’t go to Walgreens. However, my insurance doesn’t cover this medication and Walgreens has a discount program, so… I was kind of stuck… though next time, I may not go to the one by our apartment.

Want to learn more about the surgery? Check out Joan’s blog, Life with a Flare, or Kenzie’s blog, Life According to Kenz. They’ve been so helpful!

Interview with a Pediatric Rheumatologist

Posted on October 15, 2014December 6, 2021 by Grayson

A while back (okay, a year), I sat down and had a phone conversation with Dr. Alexei Grom at Cincinnati Children’s Hospital. For those of you who don’t know the name, Dr. Grom is one of the experts on Still’s and MAS in children. He also focuses on Juvenile Dermatomyositis. He was super nice, and we discussed a lot more than I’m putting here, but a good amount of it was related to my current level of care and medications, so I won’t necessarily put that info here.

One of the first questions I asked was about how Dr. Grom got into pediatric rheumatology, and why he focuses on these diseases. During his fellowship training, he worked with a pediatric rheumatologist. He found the field intellectually stimulating. Then, a SJIA patient died due to MAS. He knew he wanted to help focus on why MAS occurs in SJIA so often, and wanted to work with JDM children as well. He’s definitely not in it for the money!

In 2006, the rheumatology world reached a turning point as far as these diseases are concerned. New papers were released on SJIA, which brought about a new treatment algorithm. Kineret came out. Now, we have ideas and more treatments centered around interleukin inhibitors.

We discussed the question of whether remission or just getting the disease under a bit of control should be the goal, and remission is definitely what we all want. Dr. Grom believes that pediatricians need to learn more about these diseases and really think about them. Six to nine months post-onset is the golden window to starting aggressive treatment with the best chances of remission, yet we have children waiting over a year to get a diagnosis at all. It has to change.

I brought up methotrexate, which I had just failed for the second time (first go was pill form, second was injection). He doesn’t favor mtx for SJIA. There is some response, but poor control for us specifically. And 10-15% of JIA kids don’t respond to the medication.

I wanted to know how physicians tend to get information on pain from children, because I didn’t go through that due to my issues surrounding access to care. The biggest issue docs face (and parents too sometimes) is that it’s hard to gauge what normal is in children, especially in younger kids. He encourages parents to use pictures to illustrate the differences in how their child is doing.

Many parents and families that I know have wanted to know what doctors wish they did differently when it comes to appointments and disease management. He wants his patients and their families to understand the courses the disease can take – complications, morbidity, etc. He also wants us to be well versed in side effects on our treatments as well as treatment options. Compliance with medications is always preferred, but if that can’t happen, note why. Is it a side effect? Does the medication wipe your kid out for a week, so you change up shot days when there are big events coming up? We should have folders or binders of this kind of information. Kids should also be learning about their disease and all this as they grow with age appropriate information.

Finally we touched on a more recent theory – that SJIA/Still’s shouldn’t be lumped in with the other JIA types. Studies out there are hinting that SJIA/Still’s are both more related to the periodic fever group of diseases, which makes sense with the fevers we get!

It was a great discussion, and he really helped me get a hold on what is going on today from the provider standpoint with SJIA. He also helped push me to seek out some different medications and, if that doesn’t work, different care… which I may be doing soon.

Thank you Dr. Grom for talking with me and for all you do for SJIA kids!

I think I’m in love…

Posted on December 20, 2011December 7, 2021 by Grayson

With my new rheumy. And her nurses. And the whole office.

I got to the office, and they had like 80 handicapped parking spots near the entrance. Awesome. But I found a “normal” spot. They have a self-check-in kiosk – score. I avoided the long line. Not that it super mattered because I got in about half an hour early.

The waiting area was nice. It was large, and there were a ton of chairs. Rheumatology shares its waiting area with vascular surgery and cardiology. An interesting mix, but there was a good separation in waiting areas.

The nurse that took me back was very nice. He was a veteran, probably mid-30s, with an awesome sense of humor. I found out he’s a float nurse from GP hanging out in rheumatology sometimes, but I love him. We talked about Arabic, knee problems (he SO wins that one, even before his three deployments), and he really made me feel comfortable. He also super liked joking around with me. It was awesome, almost like having my uncle there.

My doctor herself was so nice. She asked me why I was switching, and I told her that my former doctor’s attitude just wasn’t working for me, that I wanted to be more involved with my heath and walked through these things – not just for me but for the health blogging community.

She talked to me – really talked to me. She got to know me, and listened to me gripe about my health and my life in general. She did a full examination, listening to me about the joints that are sore. We came up with an action plan together, and that’s exactly what I wanted.

So, I’m going back on MTX – but the injectable. She also gave me a stronger NSAID, but one that is known for not being harsh on the stomach. I have a referral to PT, a GP, and an ophthalmologist. The ophthalmologist part was interesting, just because she asked about my history with uveitis. As I told her, she looked at my eyes and began writing down info on a great doctor. She could see that my eyes were not symmetrical and that they were a little red.

Finally.

I am so excited.

Her nurses came in again and gave me a flu shot – while being hilarious. I spent like 15 minutes talking with one of the nurses, just hanging out. I almost didn’t want to leave.

I feel like I’m in charge of my health, and that’s exactly what I needed.

I feel so lucky to have such a wonderful doctor, and I can’t wait to see any of them in the office again.

Christmas comes early

Posted on December 19, 2011December 7, 2021 by Grayson

Or, at least, I hope it does.

The last week has been amazing. I’ve watched everyone stress out about finals and studying, and not had to deal with it for once. It really was that sinking in moment since making my decision to stop school. My body feels a lot better than I know it would if I were doing all this school stuff.

Still, it’s in rough shape.

A couple of days ago, my left hip hurt so much. It almost felt like it was swollen so much it wasn’t in its socket. Way to be, hip. Then, of course, my knee started hurting. And then, because I was favoring my right side, that started hurting.

Seriously.

Now, tomorrow is something I’ve been holding out for for a couple of months – a new rheumatologist. I’m nervous, because I always am. I know I’ll have to tell my whole story (for the 10 millionth time), get blood taken (blech), and who knows what else. I’m hoping to walk away with the beginnings of trust in my new doc, supposedly one of the best rheumatologists in Madison.

I’m also hoping to walk away with a few different medications, and a dosage change for my Humira.

Humira helped so much at the beginning. As it got colder, and my body got used to the medication, it stopped helping as much. I went from being able to hike miles this summer to being super out of shape and sweating and getting out of breath during a mile and a half walk with my boyfriend. I couldn’t even do easy yoga poses last night that I can usually do easily. So lame.

Here are my main goals for my appointment: