Pancreas and Spleen Unremarkable: Knowing Yourself Inside and Out

Ladies and Gents—do you what it feels like when you know something is off?  You can’t put your finger on exactly what is going awry, but you know something (other than your normal lupus symptoms) just isn’t right? I have been feeling like that lately and not to sound like an armchair rheumatologist, but I think it is my thyroid.

I brought this up at a doctor’s appointment in early December and the doctor, who I was seeing while my normal doctor was out on maternity leave, completely dismissed me in favor of the numbers on my chart from the last few months. “Your thyroid function is within normal range” is what she said. “I am going to withhold any treatment on that.”

I pushed once and asked why I was having all of the symptoms of hypothyroidism if I was in normal range. She told me it was because of “the heavy-duty immunosuppressant drugs” I am on. And with that, I shut up. Not because she gave me an answer, but because she was completely wrong. I am not on any immunosuppressant drugs (save Plaquenil), let alone the heavy hitters that so many lupus sufferers rely on. I stopped talking because she revealed that she wasn’t listening–and even worse, she wasn’t informed.

If there is a single thing I have learned In The Lupus, it is that patients need to advocate for themselves. This might sound obvious, but when you are tired and sick and feel like you are getting less well by the minute, it is hard to do. It is hard to find your voice again once it has been dismissed by a physician. It is hard to confidently say: I know how my body reacts. It is hard to keep speaking up and fighting for another blood test, a new or different level of medication, or a bit of understanding. It is hard–but we still have to do it.

The Goal with Lupus is to TREAT-TO-TARGET. That means finding the best possible health we can be in and working towards it. And we can do that by following the overarching principles outlined in a new article in the Annals of the Rheumatic Diseases. The first principle in treating Lupus to target is:

The management of systemic lupus erythematosus (SLE) should be based on shared decisions between the informed patient and her/his physician(s).

It is a team effort. I know my chart goes back far beyond what a doctor has in front of them, and my experience in this body goes back further still. It is a lot of information to digest. It is a lot of information to keep up with. But that is everyone’s job; patient and care provider. We have to work together to manage whatever my best health is. We all need to do the same.

So that is why I spent last night elbow deep in my medical records building a case history on a single symptom to bring to my doctor today, and lobby for some blood work and then related medication so that I can stop feeling so cold and hoarse, and start feeling alert, and warm, and on the upswing again. Somewhere in the stacks I found an ultrasound report that said: Pancreas and spleen unremarkable. That made laugh and think of all of the things I know about my own body. I know the exact size of my kidneys; I know that I have a tiny liver cyst. I have seen my heart waves on paper, my genes rearranged, and the innermost core of my own eyes in 3D. I have all of my records in order, researched the lab results, and made a list of questions. I was ready to talk with my doctor.

My appointment went well in a lot of ways. I was able to get my chart corrected. I was able to talk to my doctor about the symptoms I am experiencing and why they are concerning me. She ordered the blood work that could help unravel my current Lupus mystery (it is thyroid related, mark my words). But then everything went downhill.

When I thanked her and said: “as long as I have your memory here, I am ok, but if you ever leave, I am in a world of hurt.”

She said she was leaving the practice.

Now more than ever, I know that I have to manage my condition and promote my own health. What works for me is a doctor who will listen to me and determine a course of treatment with me–the patient and the soul living in this body–and the numbers on my chart. Because the numbers don’t have a voice and I do.

I hope you will advocate for your own health too. Know your triggers. Know your early symptoms of a flare. Know yourself and speak up. No one else will do that for you.

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PS: I am trying something new. Whenever I post about a doctor’s appointment, I am going to post the good, the bad and the ugly of the experience. For this one the good was: a medical student shadowing my doctor. I love getting to talk to med students about patient care and lupus. I also love that this student was shadowing my doctor, who I think of very highly. I also only had one vial of blood taken! The Bad: Waiting in a waiting room full of coughing and sneezing. The ugly: The pink paper robe.

Dental Surgery: I just popped a piece of gum in my mouth and weeks later, here I am.

Sorry for the absence, but I just popped a piece of gum in my mouth and weeks later, here I am.

Ten years ago I had a crown put on one of my molars. Three weeks ago, I decided to have a piece of gum rather than have a snack–one chew and out the came the crown. A trip to the dentist ended up in an appointment for surgery to have the tooth beneath the crown completely removed and a bone graft to eventually place an implant.

I should have known not to eat the gum. I am pretty sure it was my childhood love of grape Bubblicious that got me here in the first place.

So, surgery was no fun. In retrospect, there are some things I did well that made the situation better—and there are some things I could have done better. I am sharing them here in case they could help you too.

The Three Things that Made Things Better

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does.

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does 

3. Arnica gel and tablets. It is becoming something of an epidemic—Doctors and phlebotomists can’t find my veins to take blood or put in an IV. This was a particularly bad instance—five tries between both arms before they hit the kind of blood flow they wanted. I am thinking that people are a little too impatient—because a few hours later, I am a mess of redness, aching in pain and then for days after covered in bruises. Nothing makes me less indignant about the bruises or the pokes, but in the aftermath, applying Arnica gel (I get mine at Whole Foods) makes the bruises dissipate quickly—which is good because the more I look at them, the more upset I get about having them.

2. Speaking up. I am pretty proud of myself for this one, even though it had mixed results. I made sure everyone knew I had Lupus. I made sure to tell them that the tourniquet was too tight (that took a plea to two people to fix) and I did not sit in the chair until I had eye contact with the doctor while I explained my track record with amoxicillin. I was also pretty clear that the little disc they used to try to warm me up (so they could take blood) was way too hot. You win some, and you lose some.  However, if you are a medical professional and you find yourself saying, “Let me know if this is too hot. I have gloves on, so I have no idea.” Just know that it is in fact too hot. I had three burn marks—on top of having bruises.

1. My boyfriend. Seriously, I couldn’t have gotten home, let alone gotten through this without him. After surgery, I remember giving the receptionist my credit card (ouch). I remember the car pulling out into traffic, and then I remember waking up at home three hours later. I am really, really bad at asking for help, and he has admitted to not liking the responsibility of being the caretaker. But I asked and he answered. He made sure I drank water, took medicine, and when I finally woke up and rejoined society, had plenty of soup to eat. If you are reading this hun, high-five for us!

Three Things I Should Have Done Differently:

3. Told my doctor. Well, if I felt like I had a doctor. I am currently a woman without care—but more on that later. I am switching insurance—because the two Kaiser rheumatologists on staff in my area aren’t going to cut it. So I didn’t really have a rheumatologist to tell, but once I do, I am going to be better about this. I think it will save me lots of pain in the long run.

2. Planned more down time. I am not sure if I can completely blame this on Lupus, or if it is just getting older—but really, I thought I would have surgery on Friday and be well enough to go into the office on Monday. While I did actually go in to the office, I wasn’t really well enough to do it. In fact, it has been 9 days since surgery and I am still not 100%.

1. And the most important thing I could have done differently, was to have read this article from the Lupus Foundation about preparing for surgery. I didn’t think that this “surgery” was real surgery. Here is the link: http://www.lupus.org/blog/entry/how-to-prepare-for-surgery-when-you-have-lupus

 

If you’re doing something that I could learn from, please post it. Until research catches up, sharing what we are feeling seems like the best way to suffer less at the hands of Lupus.

A Constellation of Scars

So where were we? A mysterious rash at the end of summer….

That best friend I mentioned, calling out to me from across the parking lot was among  a slew of great coworkers that I had at the time. We worked and played together and we looked out for one another. So, when our accountant sent out an email about something called Inflammatory breast cancer, a lot of the women in the office marched to the doctor.   I was one of them. It had been months and I still had the red, sometimes, pink, other times purple spot on my arm long after the sunburn and the summer faded. I didn’t know how many stops there would be on the road to a diagnosis, but here is how it went for me:

Stop one: My Primary Doctor. My primary, Dr. B,  said the rash would probably go away, but I could see a dermatologist, if I wanted to.  I imagine she was a little bit tired of me. For weeks I had been complaining of exhaustion and pain in my shoulders and knees. She told me it was likely stress.

Stop two: The Dermatologist. I should mention here that I wasn’t used to going to the doctor. Growing up I had a dinosaur of a GP. He had an office in his house and four generations of my family had seen him. While this was sure a time saver when it came to filling out the “family history” section of the intake forms, that was where the benefit of his care ended. With that doctor as my only frame of reference, I didn’t really rely on the medical community to cure what ailed me. For colds and such, I used my grandmother’s home remedies. I didn’t even take Tylenol for a headache.  Going to a dermatologist in particular seemed kind of extravagant—like a totally unnecessary nicety for people who had the extra cash to spend on clearer skin.

So, the day I pulled into a dermatologist was jarring. I sat there in my car looking at the sign that said “specializing in the diagnosis of skin cancer.” Fortunately, it was freezing outside, so despite my reluctance, I went in. I left an hour later with a band-aid over a punch biopsy of the rash on my arm. A week later the biopsy results came back inconclusive. A week after that, the biopsy site wasn’t healing, so I went back. This time, I got the senior dermatologist at this office. She came in and said, “How would you like a nice thin scar that no one will notice, instead of what you have?” Translation: I am going to do another biopsy. This one required stitches and it didn’t heal either. I would have six scars on my arm by the time all of this biopsying was done. I ruefully call them my constellation of scars.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

Dermie sent me for blood work and for a gene rearrangement study. I was convinced this was going to be the answer—I mean what could be more revealing than a look at my genes, right?

Wrong.

The dermatologist was stumped. So, she sent me to another dermatologist. One who was wise, in his eighties, and of  whom she was in awe.  Dermie talked about him like he was Yoda. “He is a master in his field,” she told me. He was older, didn’t use computers, and he didn’t have much bedside manner, but he has seen everything. “You should see him immediately.” I was scared, but this could be it right? I got my hopes up even higher.

Stop three: Wise Old Dermatologist. I brought my Mom for this one. This was another doctor in his home. He was retired, but took special cases (aw, man. I was a “special case”). Stepping into his office was like stepping back in time. It was like being on the set of a doctor’s office from the 60s. The secretary had an electric typewriter and a rotary phone. She told me that all correspondence happened by mail. When I met the doctor, Dr. S we’ll call him, he asked me endless questions and took detailed notes on index cards. He looked at my arm and sent me for more blood work. Later that week, I would get a call at work. “You need to get to Roswell Park Cancer Institute immediately for tests.” I was devastated.

Somehow I had gone from, “hey if you want to see a dermatologist, go for it, but it’s probably nothing, to a lot of use of the word “immediately,” and I was scared. 

I broke down and told one of my coworkers what was going on and as I was pouring my heart out, my boss came over and told me to go home for the afternoon. My secret was out. I took the next day off and headed to the local cancer institute, where my journey really gained momentum.

This story gets better, I promise!
(to be continued)