Hey Everybody,
I had my first appointment with the rheumatologist this week.
Thanks to the excellent comments on the vampire blog, I went to my appointment looking like I just rolled out of bed, when in fact, I had just rolled out of bed.
Can you believe recent studies continue to show women (especially attractive women, or in my case, women who at least make an effort to look good) are still at higher risk for having their pain issues discounted?
What the actual fuck?
It’s 2020, isn’t it?
*Looks around for someone to concur and finds herself home alone.
No matter.
I’m opening up a can of chronic pain whoop-ass, and I’m doing what I gotta do to get the medical attention I need. *Cue waking up (in pain) the morning of my appointment.
I hobbled to the bathroom, pulled my curly (read frizzy) hair back and secured it with a clip, washed my face, picked the gunk out of the corners of my eyes, and brushed my teeth.
That’s it: no hair products, no makeup, not even a hint of mascara.
To complete my worn out chronic pain look – I wore faded yoga pants, my Johnny Cash t-shirt, and an OPC sweatshirt that used to be slightly too big, but as of now, is slightly too small. Ugh! Hate it when my clothes shrink in the dryer.
*Gives side-eye to the people snickering in the back…
Moving on!
By this point, I don’t like what I see in the mirror. I look tired (because I am), I look bloated (could be, who knows, I’m not the best judge), I look unhappy (I’m not, but I am sad at the news of the unexpected passing of a dear friend), and I look like I made zero effort to face the day (I did make zero effort, so, goal achieved).
But do I look like I’ve been battling chronic pain for the last twenty-four + years?
In MY head, I do.
I rarely do this – leave the house looking like my hair went ten rounds with a Brillo Pad and lost the fight. It’s not vanity, at least, not entirely. When I’m in pain, I make an effort to dress better, put on makeup, and do my hair.
The higher my pain levels, the more I focus on my physical appearance when I’m out in public, mostly because it’s one of the few things I have control over when it comes to my body. There are other reasons as well; we’ll get to those in another blog.
This blog. THIS blog – is all about THE Doctor.
Let me start by saying, THE Doctor is not a vampire. He is, however, young and good-looking. My initial reaction when he breezed into the exam room before I completed the paperwork on my medical history was – oh, great.
I’m fucked.
Here’s this young, hip, sweater-wearing, Twitter doctor who’s probably in a hurry to get back to his Starbuck’s Triple, Venti, Soy, No Foam Latte.
That assumption was my mistake.
My BIG mistake.
And a perfect example of why stereotyping individuals is not to our advantage.
Doctor Sadly Not a Vampire sat down after an efficient introduction and proceeded to take an extensive medical history. Without any prompting from me, he hit all the symptoms I wanted to raise, and some I hadn’t thought of on my own (hair loss, in particular, was a surprise and is also the subject of another blog). He further revealed through our discussions that he had reviewed my previous x-rays and medical information sent to him in preparation for our appointment.
At this point, I’m cautiously optimistic. Also, I’m schooching my butt around the chair like I’ve got a case of restless hiney syndrome because my buttocks are starting to hurt from the hard pleather.
He then did a quick, albeit full physical exam of my joints and Fibromyalgia tender points. This involved a lot of poking, pulling, manipulating of body parts into painful positions that are probably not painful for most people, and measuring range of motion in back, chest, and hips.
Then we sat back down, and here’s what he said:
He agrees with the Fibromyalgia diagnosis. I didn’t think it mattered to me if he did or not, but I feel weirdly vindicated. Probably, because I mostly self-diagnosed my Fibro way back in the late ’90s.
He also suspects something is going on in addition to Fibromyalgia. He mentioned Ankylosing Spondylitis along with some other types of arthritis, again, with no prompting from me.
Seriously…NO PROMPTING FROM ME!
I know, right!
I could hardly believe it either.
Next he wrote orders for the following blood tests:
HLA-B27 – a positive result means HLA-B27 is in your blood, and you may have a higher-than-average risk of certain autoimmune diseases, such as Ankylosing Spondylitis. However, a negative finding also does not mean you don’t have an autoimmune disease.
ESR – Erythrocyte Sedimentation Rate is a test that indirectly measures the degree of inflammation in the body. I’m pretty sure I’ve had this blood test before, and the results were negative.
CRP – A C-reactive Protein test measures the amount of C-reactive protein in your blood, giving a general idea of the inflammation level in your body. High levels of CRP can be caused by infections and many long-term diseases. I believe I also had this test previously.
He also ordered x-rays of my lower lumbar and sacroiliac (hip) joints.
Then he prescribed Naproxen/Esomeprazole – Naproxen is a non-steroidal anti-inflammatory drug (NSAID) used to treat joint pain, among other pain issues such as tendinitis, bursitis, and gout. Esomeprazole is a proton pump inhibitor (PPI) that blocks acid production in the stomach, a potential complication/side effect of the Naproxen.
If you’ve ever seen me try to swallow a pill, you’ll understand why I’m thrilled that these two medicines are combined into one capsule. Yay! I only have to take two pills a day, and if I don’t register any improvement in back pain, I’m to advise my doctor and request another NSAID.
Next, we talked about the things I should be doing on my own, like getting better sleep. HA! Yes. He saw my eye roll and admitted better sleep was going to be difficult to achieve with Fibromyalgia, but he insisted I try anyway. We talked about exercise and what the right kind was for me – swimming, walking, yoga, Tai Chi. Basically, anything with no to low impact.
Finally, we talked next steps, and he advised he wanted to see me back in four months for a follow-up. He even made sure the appointment was booked before I left the hospital.
Uhh, wait? What? You mean – I get to come back? You mean – I’m not dismissed, good luck, don’t let the door hit you in the sore patootie on your way out?
Did you see my hair?
I look like a shorter version of Kramer.
Well, alrighty then…so, there you have it.
I am cautiously optimistic that maybe – MAYBE – Doctor Sadly Not a Vampire is the wellness partner I need to get my chronic pain under control.
Highly cautiously optimistic! (Rose-colored glasses, remember?)
And so my journey continues one day, one week, one month at a time. Glad you’re still here and hope some of what I learn along the way can help you in some small measure, too.
In the meantime, let’s keep the discussions going! Leave a comment and tell us about some of your positive and negative experiences with stereotypes. Or don’t. That’s cool too. Feel free to do with these blogs as you will, but just a reminder either way, if you hit the subscribe button you’re entered to win one of the Caring is Sharing Prize packages. Nothing else required.
Until the next blog – peace out pain sufferers.
Current pain level 6/10.
** Never one to avoid a camera, this blog is dedicated to Christine Newman. Guaranteed, her infectious smile will continue to brighten the memories of those who loved her.
So glad to hear that your appointment was a success! As a young person suffering with chronic pain the assumptions others make about me are unbelievable. If you dont look sick are you really sick or are you just lazy, looking for sympathy, etc.
Hoping this new medication and doctor help!!
Thanks for sharing, Suzi.
If there was one thing I’d like for this blog to do, it is to encourage others, young and not so young, to find their own voice in seeking the help they need to manage their chronic pain. I let my situation go on too long. You’re right, the fear of being judged can keep us from asking for the help we need. Don’t do it! Don’t be me. That’s the lesson! Also keep going! Keep on challenging the system until you get the answers you need. They don’t always lead to a cure but they can still offer some relief!
I’m so glad your appointment went well! Did he discuss working with a nutritionist at all to build an anti-inflammatory diet? I have found that grains and sugar cause a lot of pain for me. Although it’s not the same for everyone. I can actually feel the muscles cord up in my neck and back and my range of motion gets shorter. I first learned about inflammatory foods in Grain Brain by Dr. David Perlmutter.
As far as positive and negative stereotypes, I don’t know if this really counts, but I think it speaks to the patterns our brain picks up. When we moved to a new town, I met someone who reminded me of a good friend I had in our previous home. I subconsciously picked her as a replacement for that friend, but as you might guess, it doesn’t work that way and we did not become best friends. 😉 But I judged her on some similar appearance and personality traits and expected the same situation as I had with my other friend.
Hi Katrina,
Thanks for bringing up diet! He did mention it. I actually have worked with a nutritionist and do “try” to eat an anti-inflammatory diet. Wine and beer are hard for me to give up though! And salsa. I LOVE SALSA. I’m an all in type of girl when it comes to my diet. Either I’m full on Keto or eating a Quarter Pounder with Cheese (without the bun) every day. It’s definitely something I need to work on and it’ll be a part of my wellness journey…so that means another blog.
Moving to a new town is tough! I totally get why our brains would look for something familiar. Hope you found your tribe, cause good friends are so important to keeping us healthy and happy.
Step one complete! Glad things are moving forward and they are continuing to investigate. Hope all the extra bloodwork and xrays will help you further find answers. Hope you have better days ahead.
Thanks so much, Deb. Didn’t get a magic pill but feeling positive!
Yay, actually sounds like you may have finally found someone who actually knows what he is doing ! ( I rejoice because I have seen soooo many specialists in my lifetime so am happy for you). Glad they are finally adding these blood components to testing as a routine ! It’s been a long time coming for those. The Naprosyn works the best for me ( make sure they check you kidney function regularly) and after much swearing and many mandatory rehabs I can finally say that the best exercises were/still are a combination of all the ones he mentioned. Oh and add the Caribbean in there somewhere. Wink Wink. Those warm waters and colour are incredibly healing so much so that we put in a jet tub with chromatherapy lights when we built our house.( yes there is one colour that mimics the Caribbean colour, enter sigh of relief)
Thank you for sharing Edith. You take the words right out of my brain & arrange them with such humour that I am for a moment relieved from pain. And for that I am grateful. I wish you rest…
Thanks so much, Alice! Your encouragement both in finding my wellness path and in sharing the journey is appreciated in the most heartfelt way!
Yes to the Caribbean! And yes to the jet tub! I think both deserve dedicated blogs. *Adds to list!
You. Me. Yoga (I try to go to Sarah’s class on Mondays) You. Me. Aquafit (I try to go to Melissa’s class on Thursdays)
XO everyone needs validation and understanding.
Sorry your doc is not …. Vishous – son of the Bloodletter and Scribe Virgin…. But hey. Sounds like a reasonable alternative. ❤️
OMG – Vishous!!!
Now he’s worth putting a hip out of socket for!!!
Yes. YOU. Me. Yoga.
Yes. YOU. Me. Aquafit.
Need deets.
xo
Our friend Suzanne sent me your link. Was also diagnosed in summer of 2018. Was having an MRI on another issue when the technician spotted something. He told me that I needed a diffrent MRI to see. My family doc said no that it was not necessary but i was persistent. Next thing u know I’m being diagnosed by a specialist and bam!!! She said wow u have been suffering with this since your early 20’s. I started to cry…finaly someone who affirmed me that I was not crazy. Lol. I go day by day….I used to think if I wake up in no pain it’s going to be a great day! Now if I wake up and being able to walk…its going to be a great day. Hahaha. I go through life now that I laugh at everything have fun and surround myself with fun people.
And most of all…I just go with the flow. Why not?
Hi Lee!
Thanks so much for joining in. Good for you for being persistent! I definitely let my issues go on too long and I can totally relate to the “crazy” comment. When you take all our possible symptoms into account, and the fact that they don’t all flare or appear at the same time, it can be very confusing! I had myself convinced my doctor would think I was a hypochondriac if I raised all my pain issues in one appointment. Totally agree – we need to laugh, or cry, or dance in the rain if the mood strikes! Going with the flow – yep! So much easier on our joints than swimming upstream!
Love seeing you here Lee-Lee!! Strength from finding “kindred spirits!” 🤗
Truth, Suzanne! Strength in numbers and shared experiences, for sure.
So glad you found someone who listened. Figuring out what’s what is an important first step to figuring out a way to cope with it. Having someone “official” confirm what you felt/knew for so long is validating and reassuring. Fingers crossed it opens the door for some relief. 💕🤗
Thanks, Diane.
You’re so right about the “official” part. I didn’t realize I needed to hear a medical professional acknowledge there was a cause for my pain until it happened.
I physically felt the relief! A little crazy on my part to let it go on so long! Oooo, that could be a good guest blog topic! Just sayin’.