Now We Play the Waiting Game

Posted on by Grayson

I had acupuncture bright and early at 8:30 this morning. I had to bring up the symptoms I’ve been having lately. My pain rehab doctor said he thinks this sounds nerve-related and we got to the needles in my back bit.
After stopping and getting labs done for my rheumatologist, I called her office and left a message to have someone call me back. I rely heavily on my rheumy because, as great as my primary care doc is, she is extremely busy and can’t usually see me on an emergency basis like my rheumy can.
When her nurse called back, I explained what’s going on. She practiced great reflective listening and said she was concerned about my cervical spine.
I am, too.
I then explained my familial history of MS and she knew exactly where my mind was going.
Neither of us were happy. She said she’d talk with the rheumy and call me back. The nearly-four-hour wait was really hard to sit through – so much so that I slept for part of it. The nurse actually woke me up when she called, but I was more than happy for that.
“Let’s start with X-rays.”
I popped to the clinic near my apartment and got the highest number of X-rays done on my neck that I’ve ever had.
My biggest wish right now is that the X-rays show something, some hint of something at least. I don’t want this to be an issue of my disease affecting my neck, but I’ll take that over MS because of my history of watching that take a life before the breakthroughs made in the last twenty years.
Now we play the waiting game.
 
This is an update kinda to the last post.

 

I Spent Rare Disease Day on the Couch

Posted on by Grayson

I had to sleep on the couch last night. I’ve spent 99% of my day on the couch, too.
I hate doing that.
My pain the last few days has been higher than I’ve wanted to admit, even to myself. Today, this pain sits in my left knee and hip. I wanted to run errands and clean and do enough today that our apartment wouldn’t feel so cluttered.
On Sunday, some of my newer or more newly-worrying symptoms returned.
Since the summer of 2012, I’ve had a symptom off and on that I never was really concerned about until now. It’s what I describe as a whooshing of sleepiness down my arms from my neck. I say sleepiness as it’s not exactly numbness (though it’s similar) and I get very tired when this happens.
The first time I can remember this happening was at a museum. Hubs and I were walking around looking at collections and I got overheated, very lightheaded, and had this arm-whooshing.
I nearly passed out.
Understandably, I decided it was probably a fibromyalgia thing — something I would be diagnosed with a few months later after breaking down in front of a previous rheumatologist’s nurse practitioner. I knew I had either fibro or multiple sclerosis. The latter led to my great grandmother’s death and I just couldn’t handle the not-knowing.
Between the arm-whooshing recently growing in intensity and newer symptoms — intense leg twitching, slight slurring of speech, etc — I’m not sure that MS is off the table.
The allodynia and other symptoms I have of fibro are things I always believed to be fibro-specific… but I recently learned they overlap more with MS than I ever knew.
I’m honestly very scared and devastated — scared because I know that I might have MS and devastated that my great grandma lived with so much of what I’m dealing with on a day-to-day basis.
She was always so supportive of my and my health issues. When I first got sick at age five, she was the most supportive person in my life. She tried to make me less afraid of the possibilities that systemic juvenile arthritis can bring, like wheelchair and scooter use. She relied on her scooter and tried to make it fun, racing it around our backyard. That part didn’t exactly stick for me, because I knew she hated being confined to it, but that’s okay. I was always around to help get things out of cabinets so we could cook together (as long as she let me stand on the counter tops).
I take so much of my personality from her, the good and the not-so-good. She was blunt, even to us kiddos, but always made sure that we knew we were so very much loved by her.
It isn’t the end of the world if I wind up having the same thing as her. I’m just scared because I watched it take her body and then her voice and mind. That gradual wasting away is what scares me… even though I know that medications and other treatments have come a long, long way since she passed in 1999.
Hubs and I have discussed it and we would handle this like any other diagnosis: taking it one day at a time.
Still, I’m scared.
Thursday morning, bright and early, I see my pain rehab doc. I have to tell him about this and see what else we can do, see how he and the rheumy want to evaluate these symptoms.
I’ll do labs and see if my inflammation levels are down at all, since they were high in January.
And I’ll wake up on Friday ready to head to Minneapolis for the weekend, hug some of my favorite people, eat some amazingly delicious Parkway Pizza, and watch some collegiate women’s hockey.
This post originally appeared on Medium. You can read an update in the next post.

 

Acupuncture saved my life

Posted on by Grayson

In the last half of 2016, I began seeing a pain rehabilitation doctor I was referred to by my rheumatologist. My neck has been just god awful for me lately.
For a long time, I hadn’t been sleeping in my bed but on the couch. Even then, I was barely sleeping.
We started with trigger point injections. This is where lidocaine (a numbing agent) is injected directly into very tight muscular points. It relieves the tightness and allows you to move in ways that will help work that knot out. These were really effective at the start, but began to very quickly lose effectiveness past the first few days.
Our plan b was to start acupuncture and see how that went. It isn’t covered by our insurance and y’all know how I feel about ‘alternative’ medicine things, but I was willing to give it a try.
 
I can honestly say right now that I don’t know if I would be alive without acupuncture.
People may think I’m being melodramatic in saying this but, for me, it’s a reality. I can deal with pain in a joint on a normal basis – heck, I lived and worked with bursitis for several months. This neck pain is something that is just demoralizing and awful in the worst way.
I can avoid using a joint like my knee but not my neck!
We’ve only done the acupuncture a few times, but this last time I went for three weeks until having real neck pain again this past Wednesday. And, when I say this, I mean little-to-no breakthrough pain to manage as well – no TENS unit, hot packs, ice, ointments (aside from those to ease my sunburn), etc.
This is practically a miracle for me.
I’ve been able to sleep! And in my bed next to my husband at that! Tuesday night was the first night since I got back from Mexico that I didn’t sleep in my bed once my sunburn cleared up enough.
All that said, this has been also a practice in self-care. For example, I can’t be upright all day. It’s just not something I can do and survive. That’s actually been part of what’s wound up causing me more pain this week.
The amount of time I’ve spent upright the last two days, though, has been productive and amazing. In addition to publicly speaking out again sexism and sexual harassment that pervades our patient communities, I’ve also been working on some great things for Chronic Sex and related projects. I won’t talk too much about it here, but it’ll advance a lot of research and information on sex/intimacy and illness/pain/disability.
I get acupuncture next week Thursday and I couldn’t be more excited.

 

Sometimes you just need a reset

Posted on by Grayson

The last few weeks have seen me having a lot of good days which I desperately needed.
It all started with a trip to Cancun, Mexico with my college roommate. It was a great way to take a break from social media and work. I mean, I did manage to get a horrible sunburn because we were drinking margaritas in the ocean, but that’s beside the point.
It’s hard to not rest and want to soak up as much sun as possible when you’re around this instead of frozen tundra Wisconsin life.
It was nice to get a sunburn honestly. It was a good reminder that pain usually comes to people after they do something.
Katy and I also just really needed to spend time together in the wake of all the political ick going on.
Despite having a sunburn when I got back, I really felt like I had a fire lit under my ass. For the first time in a while, I had really just taken a legit break and felt ready to attack things.
A week later, T and I got to go see one of my favorite bands – Boyz II Men!
I’ve been listening to them ever since I was little and I have always enjoyed their music. Seeing them in person was amazing.
It also got me thinking about other things from my youth that I really enjoyed… like albondigas soup… which all connects back to Mexico, funny enough. I talk about it in my latest piece over on Medium.
Hey, and I lost like five pounds within a month!
It’s not that things are all going right. My inflammation levels are high. My fatigue is being a butt. I have a million things I want to do and not always enough energy to do them.
Still, things feel better. Rest is incredibly important, especially in times of resistance. Make sure you’re taking care of you.

 

Review: TechCare Pro TENS Unit

Posted on by Grayson

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Today, I am reviewing the TechCare Pro TENS Unit.

 

For those unfamiliar with the term, TENS stands for transcutaneous electrical nerve stimulation. This kind of stimulation can help to relieve muscle tension and pain by essentially exercising muscles using electricity. TENS units help provide that stimulation via electrodes the user places on their body. The user then controls the intensity and type of stimulation via the unit itself.

 

Having used some TENS units in the past, I really appreciated that the TechCare Pro was really light. Others I’ve had have been heavy and a little difficult to manage. It was easy to plug in the electrodes and easy to utilize those.

 

 

It comes with two differently sized kinds of electrodes – a set of tiny ones and a set of larger ones. The larger ones are about the same size that one might find in a drugstore or elsewhere. The tiny ones are smaller than I’ve seen elsewhere and that was actually pretty nice to have. I was able to use those in spots that were more difficult to get the others onto like around my collarbones.

 

One thing I found odd with this unit is that there is no start/stop/pause button. Once you turn on the device, it’s on and going. If you want to switch modes, you have to turn it off and then get back to the mode and intensity you want to utilize. That would be amazing to have on this unit as it would allow for repositioning of electrodes – or even a quick bathroom break – without turning the unit off.

 

 

The button in the middle that one might assume is a pause button actually changes the modes. See, there are these kind of ‘parent-modes’ – those you see in the photo above – and each parent-mode has 2-4 modes within it. I do wish these modes were slightly more straightforward. However, it’s easy enough to switch between these modes that it really doesn’t bother me.

 

All in all, this isn’t necessarily the most intuitive device – but does it work?

 

Yes, yes it does.

 

This is one of the most comfortable and effective TENS units I’ve ever used.

 

The low-intensity levels are effective on light pain. I haven’t had to go past mid-level intensity on any of these modes in order to get relief.

 

The fact that it’s so lightweight means that it’s perfect for me. Between traveling a lot and having major fatigue issues lately, heavier units of any kind are getting more and more difficult to utilize. Heck, my television remote isn’t the easiest for me to hold lately. This is lighter than that, even.

 

The price honestly can’t be beat, either. Similar devices can be several hundred dollars, but this one costs far less.

 
You can snag your own TechCare Pro Silver TENS Unit over on Amazon.

 

Repealing the ACA will kill disabled people

Posted on by Grayson

With the proposed changes coming to healthcare, I can’t afford to tiptoe around the situation.
Repealing the Patient Protection and Affordable Care Act will kill disabled people.
50 million Americans with disabilities depend on the protections that the ACA provides. The CDC recently came out with statistics that show that nearly half of all Americans live with at least one chronic illness – and they depend on the ACA, too.
Before the ACA went into effect – before I even started this site – I was uninsured for a while. While my father kept insurance on me until I was 18 as a part of child support, mother didn’t utilize it at all. Without continuity of care, I suffered immensely – not just pain but issues that wouldn’t have happened had she gotten me the right (or any) medical care.
Once I hit 18 and got into college, I was concerned about what to do. I knew I needed to get medical care but couldn’t afford anything.
2007 Kirsten
When I met T, I started trying to get quotes from insurance companies. I was very upfront about the fact that I had multiple chronic illnesses… which led to a lot of sad phone calls and emails. One memorable phone call with one representative got me to give up. I was told that it would be $2200 a month for coverage and that it would not cover anything related to my pre-existing conditions.
Since my diseases affect every single part of my body, there was no point to this. I obviously couldn’t afford it anyway.
I eventually was able to get coverage through our college’s partnership with an insurance company. It didn’t cover much, though, and I began to go into medical debt quickly. Luckily, some of that was forgiven as the hospital I saw my first adult rheumatologist at had a great forgiveness plan for us poor people.
 
Thank you Froedert Hospital.
Still, it was a constant fight. I had to get things rediagnosed or diagnosed at all. This meant far more visits than the average person has in a year with the accompanying blood draws and everything. I moved which meant transferring that care and then dealing with insurance not covering a lot…
which meant more medical debt (that we only recently paid off).
I’m lucky enough that I’m married to someone whose insurance covers me. It’s good insurance and allows me to have access to the specialists I need to see.
Not everyone is so lucky.
 
Others with disabilities or chronic illnesses rely on more services than I usually need. Others are better at seeking out the care they need than I am. Others simply have different needs that wind up costing more like wheelchairs and other equipment – along with the medical visits for physical therapy, etc.
Hell, if T and I ever got divorced? I’d be practically as good as dead. There are worries that these efforts will force those of us who need healthcare access to stay in abusive relationships because, like me, they need that coverage.
My family will still be affected by the ACA repeal. People in my family or group of friends will lose medical care making access to the life-saving medications and treatments they need nearly impossible. More people will go bankrupt or lose their homes as a result of medical issues. Others will no longer be able to afford to live in more accessible housing, accessible transportation, and more.
 
Some will die.
The ACA provides protections for many people – things that are often overlooked when we talk repeal.
It provides access to free contraception, yes, and better access to reproductive health care – but it also allows children up to age 26 to stay on their parents’ insurance plans.
It provides coverage for people through subsidies, but also (finally) makes good on a centuries’ old promise to Native Americans to cover their health needs.
Clinics in rural areas who depend on the ACA protections to keep them going will go out of business and jobs will be lost.
The things I care about the most? CHIP – the Children’s Health Insurance Program – and coverage for our pre-existing conditions? Those were basically just dumped.
 
If little Kirsten was young today and lived with a parent that wasn’t abusive? She would be incredibly screwed.
It’s not enough for those now running our nation to take progress back – they have to enact legislation that will remove protections for those of us with disabilities and pre-existing conditions. They have to kill us before they’ll be happy.
 
Write to your legislators. Call them. Tell them how this will affect you and nearly half the nation. Tell them that, like me, you’re not ready to die for their petty politics and racist ideologies.
 

 

Struggling

Posted on by Grayson

I’ve been fairly absent from social media and such lately and, honestly, it’s because I’m struggling a lot – physically, emotionally, mentally.
Coming back from Portland was a mess – delayed flights, sleeping in the airport, etc. I became literally exhausted. It was really bad. On top of that, the longest flight (Portland to Chicago) had the heat on like 85 degrees.
I don’t do well with heat, y’all.
My body is so used to the pacific time zone that it’s been an adjustment to try to get back on central time.
Fatigue and pain keep sneaking back in and stealing away moments, hours, days.
My emotions are in a rough spot, too.
Portland was so full of nourishment and love. Wisconsin is… not. Don’t get me wrong – I am loved here and feel nourished, but it is somehow lesser than when I travel. I don’t have people here excited really to see me or learn from me as much.
This is where I come to recharge, but it feels draining to me right now.
Part of it is that the abandonment feels are high lately – something that I haven’t really struggled with during the holidays. Many of the people I’ve been physically close to in the past are all over the world and others just aren’t really there for me right now. It’s hard for me to communicate what I need and I know that’s a big part of it.
It’s messing with my head. I get stuck on thoughts and can’t get them out. I have these imaginary conversations of what I would say to people if I just had the willpower to tell them – ways I need help or they’ve hurt me or any number of things.
How can I be so blunt online but not in my interpersonal relationships?
Growing up in abuse fucks you up for life, friends.
Since the election, I have been doing a lot of emotional work for others – checking in on people and working on ways to add to the resistance against he-who-must-not-be-named.
We need support but also need to take care of us, so right now I’m trying to practice what I preach.
I’ll be around, but I might be slower to respond to things.

 

2016 in Review

Posted on by Grayson

This year has been hella weird. I’ve gotten to grow and move on with some big projects, trying new things, traveling, and more… but also Cheeto Voldemort….
(source)
I can’t.
I’ve been pretty absent here lately. Part of it is how much attention Chronic Sex (and self-care) needs, but a lot of it is that I’m spending a lot of time doing emotional work with people really affected by the election. Some of us potentially stand to lose our lives because of our incoming walking contradiction of a president-elect. I’ve been in contact with people nearly non-stop since November 8th, and that’s really hard.
 
We are scared, exhausted, nauseated.
 
We don’t have the ability to give someone a chance when we are literally fighting for our lives.
The lack of compassion, empathy, and inclusivity/intersectionality within groups fighting DT is incredibly disturbing and adding another layer onto the fight. Many of us are having to fight to even be recognized as members of the fight against DT.
Our checks and balances can’t do much when everything is controlled by one party, and that scares the shit out of me… so, for now, we keep organizing. We keep checking in on each other and providing emotional safe havens.
We don’t have another choice.
Anyway… At the beginning of the year, I learned how to swim (kinda). I wasn’t able to keep up with the classes because of how it was affecting my health. Still, I felt really cool about being able to finally conquer that fun thing…ish.
I intertwined my Trekkie nature with my PTSD, sharing initial feels about how Seven of Nine is treated for PTSD earlier in the year and final feels recently. I had some weird feels about how I’ve personified ‘Arthur’ (my arthritis fun) in the past – and how that has changed, too.
I got to head to New York writing for a conference and, while there, got to meet some great people I’m happy to call pals. I have been lucky enough to head back to the big apple twice this year, once just for funsies with family… and I basically never stopped talking about Hamilton… but then got to see it on my second NYC trip!
I got to attend some great conferences – ePharma, HealtheVoices, Self Care Mvmt in Toronto, both Juvenile Arthritis Conferences, Women in Pain, Stanford MedX, Joint Decisions Empowerment Summit, and more. I’ve traveled all over lately and I am loving it.
I even got to spend time with one of my favorite humans, Kate McCombs, in Portland running some of her amazing Tea & Empathy workshops. The Arthritis Foundation chose me as the adult honoree for the Walk to Cure Arthritis in May, too.
Meeting some great people has definitely been a part of my list this year, too, from David Tennant and Alex Kingston to Vice President Joe Biden to Kate McCombs to Karen Duffy and more.
My blog over on Creaky Joints (which has been a little neglected lately) was voted one of the ’10 Arthritis Blogs We Can’t Stop Reading’ by Everyday Health! I’ve been featured several places this year, too – Kids Get Arthritis, Too, Kinkly, BlogHer, and more.
Chronic Sex is up and running with a podcast, chats, affiliates, and more. I’ve been getting some international attention for that and it’s really surreal. A few weeks ago, Kate and I went and heard Dan Savage and some colleagues talk. Instead of feeling unworthy, I felt like I belonged. These people knew who I was and the work I was doing and were excited to meet me.
It was hella weird and validating at the same time.
Some of my favorite products ever got tested by me like healing CBD lotion, Axon Optics migraine glasses, and the Oska Pulse. I also wrote my first e-book on self-love with chronic illness fun.
Our family went through some loss this year – Aunt B and Oreo. Because of Aunt B and her graciousness, we had enough money for me to leave my day job and really focus on what I want to do with my life. Because of leaving my job, I was able to focus on spending time and loving every second of every single day with our boys – especially Oreo.
It’s not like my relationship with T has ever sucked, but we’ve definitely both made strides this year to connect in new and different ways. A lot of this has to do with me learning to let him in a little better, but also ironically with my journey to being a sex educator. I find that we’re both more open to questions and not as hurt by answers. Consent-based communication rocks.
New adventures await me in 2017, from conferences to friend vacations to hard work and more. I only hope we can all make it to this time next year unscathed.

 

Captain Janeway Sucks

Posted on by Grayson

captain janeway sucks

Growing up, I always loved Captain Janeway. It was one of those naive baby-feminist things – finally, there is a female captain! I felt like she was the epitome of sassy and strong, just what a starship captain with a vagina should be naturally.

Earlier this year, I wrote a post entitled The Raven about the Star Trek: Voyager episode of the same name. We were in season four of the seven-season series and Seven of Nine was just going through her initial Post-Traumatic Stress fun. This was especially important as I had finally been diagnosed with PTSD in 2015.

I started to identify with Seven, the hot chick, for the first time in my life.

I never identified with Seven before. She was the unattainable hot girl with more logic than a Vulcan. She had these amazing outfits and cool face makeup. She was out of reach. Because of our shared diagnosis, though, she became incredibly relatable.

The small child in me – the one who was going through all of these PTSD episodes while Voyager was on – cringes so much at all of this. As soon as The Raven hit our television screen earlier this year, I knew she had PTSD. I said it before the Doctor even did once given both her reactions and the findings of his scans.

Poor T, watching all of these with me. I like to think these episodes helped me explain some PTSD things. I’m sure it really wasn’t fun to watch with me, though.

In the following episodes, most people on the ship are helpful with Seven. They understand that some of her reactions aren’t things she can control and go out of their way to help when they can. It takes a while for most, sure, but the adventures Voyager faces seem to speed up this acceptance. The Doctor, a holograph, becomes both her biggest fanboy and advocate.

Captain Janeway does not advocate for Seven, quite arguably the most vulnerable person on the crew. Instead, Seven finds herself used and abused not unlike she did with the Borg. One could argue that, on Voyager, using Seven in these ways makes their actions even more reprehensible than the Borg – at least with them, Seven wasn’t really conscious of what was going on. She didn’t have rights to be taken away.

In Retrospect, Seven’s PTSD is even further defined by a violation from a trader. Instead of really championing for helping Seven, Janeway takes the offender’s side of things pretty quickly. In addition to this, Janeway removes Seven’s free will in several episodes, using Seven to accomplish whatever means she wishes.

I’m not sure why this is. Is there a female jealousy component here, that Seven is logical, intelligent, and beautiful? Does Janeway feel threatened? Or, like some parents, does she feel as though Seven’s entire life and being should somehow be hers?

I don’t know.

I do know this is all in stark contrast to Captain Picard who works tirelessly to help the members of his crew understand life. I can’t help but wonder how Data would have done on Voyager instead of the Enterprise. I’m sure Janeway would have been proud of him, but it seems as though she would have also manipulated him where possible, too.

Picard isn’t without his faults, but it certainly seems Seven would have done better had he discovered her during his time as Locutus of Borg.

decorative
source

As a child, I so loved Voyager. I didn’t really pay attention to the plot, but it was Star Trek – my favorite. I paid much more attention to The Next Generation episodes we sometimes watched as a family.

It’s hard for me to admit how much I dislike Janeway now. It’s interesting the number of things that I had to endure to get me to the point of stating how awful she is – religious/philosophy studies, ethical ideals, finally putting a name to my PTSD and getting away from abuse, etc. It’s really hard to stomach from an intersectional feminist point of view, too, that Janeway would be so dismissive of a fellow female.

It’s not unlike our current political fun. Slightly off-topic, but this week alone several of the anti-Trump groups have perpetuated stigmas against us disabled and chronically ill people. Because they have degrees, they assume they’re knowledgeable in marginalization and don’t think they’re doing anything wrong (or, on the flipside, some don’t care).

What we really need – us anti-Trump cripples – is for people to listen. Hear us when we talk about what we are dealing with. Support us and give us a platform to talk about what’s happening, what may happen, and what we can do to avoid the worst of the worst.

That’s really not different than what Seven needed – or what I need during PTSD time. It doesn’t seem as though that is something Janeway is capable of providing, at least to Seven.

Have you ever encountered a television show that depicted one of your diagnoses? How did they do? How did this make you feel?

5 Questions to Ask a New Doctor

Posted on by Grayson

We’ve all been there – you’re sitting at home the night before seeing a new physician and trying to prep. You’re not sure what questions you should ask them and, frankly, you’re more concerned with trying to express your entire medical history in half an hour.
Fear no more! Here are my 5 most important questions.
Do you believe in XYZ diagnosis?
Fibromyalgia has a history of not being believed as a diagnosis. There are, unfortunately, many doctors who still believe this is a fake diagnosis essentially for female hysteria and hypochondria.
If you encounter an older male doctor especially and have fibro, ask this question.
Do you feel comfortable taking on my case?
This is more applicable than the above for most people. Humans are complicated beings. We have multiple medical/health issues, sources of stress, medications, and more. For those of us with rarer conditions, this is a pivotal question to ask.
When I was investigating new rheumatologists this time two years ago, I called an office and asked if they could see if this doctor would be comfortable seeing someone with my conglomeration of fun things. I expected to get a call back from a medical assistant during a lull or maybe the nurse, but doc called me back. She wanted to ask more and we have a pretty long conversation.
She outlined for me right away what she would do, what she would avoid, and more. She was upset that I wasn’t on one of the SJIA-approved medications and wanted to try Kineret/Anakinra right away.
Needless to say, the amount of care she took in speaking with me before I was even her patient led to my decision to see her.
What is your communication style like?
I think it’s important for people to at least be aware of communication preferences or styles that we each may have. This is important in any relationship but can be vital in healthcare.
I mean, this stuff gets into life and death sometimes y’all.
My rheumy and I utilize the electronic medical record system known as MyChart. It’s a widespread EMR system that is fully customizable and happens to be local-ish for us, too. It winds up being like sending an email and is pretty secure. In her office, I usually get same-day responses or (rarely) may have to wait until the next day.
In other offices, it can take up to a week for a response.
This is definitely a part of why it’s important to see what your doc wants to know in what way(s).
When XYZ happens, do you prefer I contact you or another physician?
This is one that I frankly need to ask all my current healthcare peeps.
I see my rheumy and related healthcare providers most often. This means that I sometimes am not sure who I should alert about certain things. Sure, things like sinus infections, etc, usually wind up warranting a trip to urgent care since I’m on immunosuppressants. Injuries do, too, due to their severity, like when I split open my foot.
But what about a new symptom that could be a rheumy thing? Do I go GP first, even though she’s really inaccessible as far as schedule?
Some people really rely on their specialists due to the crummy quality of their primary care selection. I once had an old PCP tell me 1) this abscess I clearly had was a pimple, and, 2) to take my biologic as scheduled.
He also laughed literally in my face during that, so he was definitely fired.
The point is, we have to start asking this. It’s just as important as who to contact first in an emergency.
Are my medications ones that you feel comfortable prescribing?
This is one that I wish I had asked before seeing my new rheumy. The non-steroidal anti-inflammatory (NSAID) and Lyrica that I take several times daily aren’t things doc feels awesome about. That said, she knows I might not be alive without them, so she prescribes them but always with a goal of lowering them eventually.
The supply muscle relaxers I had ‘just in case’ is currently dwindling and she’s not down with prescribing those like my last doc was.
This is something that I will have to ask my primary care doctor about instead. I believe that she would be down with that, especially if I were to tell her how long this last bottle has really lasted.
What questions do you ask new healthcare peeps? Are there any you’ve learned to ask the hard way?