This post is going to be something of a mess as I’m having trouble distilling all of the issues I’m having with my disease(s) into specific themes. I’ve been pondering and trying to make sense of everything for the last couple of days (while knitting, of course!) and here are the main threads of thought.
- When you are chronically ill it is hard to be assertive with medical professionals upon whom you depend.
- In a life with constant symptoms and annoyances, when is it time to insist that something must be done to help you?
- How should I respond when medical professionals insist that test results prove that the symptoms I’m experiencing aren’t really happening?
I’d like to set the stage for the little adventure I’ve been on for the last 6 months. Actually, I need to go back farther in my odyssey for this to make any sense. It has been 5 years since I was first diagnosed with systemic sclerosis (scleroderma), Sjogren’s Disease, and fibromyalgia. For the last 3 years I’ve been experiencing painful and burning muscles, joint pain, and swollen bursa. I am just miserable and struggle to walk on some days, and I’ve noticed that I have many other symptoms on these bad days: fatigue, brain fog, edema, eczema, GI woes, hair loss, and shortness of breath. I keep checking to see if I’m running a fever, and I feel so sore and sick it feels like I must be coming down with influenza. I call these surges of symptoms “flares”.
If I break down and take an NSAID (ibuprofen) , a drug I’m forbidden to use as it might damage my kidneys, I can buy myself 2 good days as my flare symptoms fade into the background. Other supplements and medications that I’ve taken also make my symptoms subside, and when I checked they all had anti-inflammatory properties (doxycycline and tart cherry extract, I’m talking to you!). Hmmm… it’s almost like I’m struggling with inflammation, huh.
Because of my observations I’ve been suspecting that I’m in the grips of some type of systemic inflammatory event, and for three years I’ve been consistently reporting to my rheumatologist and others that I’m struggling and that I need help. Mostly I’m told that I have a chronic illness and that there is nothing that can be given to me that will not cause damage to my stomach or kidneys. I’ve cried. I’ve been bounced between doctors. I finally got a referral to physical therapy but I continued to struggle. Mostly I just maintained and accepted my fate, trying to make the best of things. My world closed in as I retreated to my “safe house” to manage my symptoms.
In February I tried to raise the pain issue with my rheumatologist again, and she just snapped at me that I was on the best medications available, I didn’t have inflammation because my C-reactive protein was normal, and that I was always complaining, and that maybe she should prescribe me some anti-depressants! Simultaneously outraged and heartbroken, I refused. I got out of there and cried in the car. I clearly needed a new doctor, but I didn’t know of a better one, and I needed more than my own observations to press my case.
Here’s the deal: I used to do medical research on, ironically, scleroderma. I’ve sat through lots and lots of presentations by physicians struggling to treat patients with rheumatic conditions. I know to be skeptical of cookie-cutter treatment plans, and to always follow the data wherever it takes you, even if it seems to be unreasonable at first. I know to remember that even if 90% of patients respond to specific medications and treatment plans, there are still the others who need something different.
Struggling to walk, in pain, and short of sleep, I made appointments with other doctors in my care team. I also began to collect data to support my inflammation hypothesis. I also began to hunt for another rheumatologist.
- My physical therapist told me my joints were too swollen for me to go to the gym. Or to do yoga. Maybe I could do a stationary bike… carefully.
- The dermatologist, shocked by my swollen face, immediately prescribed an anti-inflammatory ointment and doxycycline, an antibiotic with anti-inflammatory properties. Wow! Big improvement. Better than ibuprofen!
- My internist stepped in and prescribed inhaled steroids and another anti-inflammatory gel to put on my hip. Wow, wow, wow!!! Huge improvement. I can breathe again!! Brain fog went out the door, energy came up, and I had less joint and muscle pain. My hair started to grow back in and my stomach pain stopped. This was just darn thrilling, people!
- This week an orthopedic hip specialist that my internist referred me to told me that I have IT band syndrome and bursitis. I now need to double down on the anti-inflammatory gel, there is more physical therapy in my future, and injections of steroids into that hip bursa will happen if my immune system, already suppressed, can handle it. Because I’m on high risk medications to crush my immune system into submission these things have to go slowly, but the process is now in motion.
I don’t know about you, but it sure seems crystal clear that I’m dealing with inflammation, right? Imagine my shock (NOT) to read a research study last night that showed that C-reactive protein, the inflammatory marker that my rheumatologist uses to assess my disease, does not become elevated in scleroderma’s fibrotic process. You know, the process that made my IT band become so thickened and inflamed that it is clearly visible on my x-rays and responsible for causing my bursitis. “We can’t be sure that scleroderma caused this,” said the orthopedic specialist. “Well, I’m pretty sure I didn’t get this from knitting,” I snarkily replied. We also discussed if I might have bursitis on the inside of my hip joint. “Well, that would be unusual,” he said. “Please, you’re talking to someone with a rare disease,” I replied. He acknowledged the point. This is how normal doctors talk with to their patients.
Shame on my rheumatologist who doesn’t let me talk to her, who used inappropriate data to dismiss my symptoms, and then finally disparaged me as I pressed for acknowledgement and help. I don’t know if an earlier intervention could have saved me from bursitis and scarred tendons, but now I have a clearly established track record that documents inflammation and I feel empowered to move on to another doctor. I talked to some patients active in our local Scleroderma Foundation chapter, and I have the name of a rheumatologist who is treating several other patients with my battery of conditions.
Which takes me back to my original points that I have been pondering for weeks:
- When you are chronically ill it is hard to be assertive with medical professionals upon whom you depend. Yes, it is. I forgive myself for crying in the car. I was blindsided and ill-prepared to argue with a specialist who deliberately places patients on the defensive to fend off requests for help. Who could have imagined such a thing? I now recognize that this is a defensive tactic by the physician, it is inappropriate, and I will no longer tolerate it. She took advantage of my dependence upon her to victimize me. If her test results do not account for my observed symptoms, then we need other tests and different thinking. That’s what I learned as a scientist, it is valid, and I will stick to my guns if this happens again. But not with this doctor: I’m moving on!
- In a life with constant symptoms and annoyances, when is it time to insist that something must be done to help you? Sadly, things are not rosy when living with a chronic disease that has no direct treatment and piecemeal strategies for symptoms. When you can no longer tolerate the life you are living it is time to speak up!!
- How should I respond when medical professionals insist that test results prove that the symptoms I’m experiencing aren’t really happening? Well, that is poppycock, right? If you are vomiting blood, so to speak, it doesn’t matter what their little image is showing them on the computer! I responded by going to other members of my medical team and securing medical interventions from them (and thereby building a cascade of supporting evidence), getting full copies of all my test results, doing a literature search on the drugs and tests the rheumatologist was relying on, and activating my network to get the name of a doctor more appropriate for my medical circumstances.
Today I am 5 days into the increased dose of anti-inflammatory gel to get my bursitis under control and I’ve started my physical therapy again. I am better: I actually lifted my leg to get into the car without assistance! Once again I need to wait a few weeks/months to make sure my kidneys and cell counts are stable before adding another drug like a cortisone injection into that bad-boy hip bursa, but I am making progress and am comfortable with what is happening now.
Believe it or not, after all of this I still don’t have a title for this post. Ugh. What was this about?
Refusing to be a victim!
Manipulating the health care system for fun and (pain-reducing) profit?
Fighting for your mojo when no one else can?
That’s it. Fighting for my mojo. Because, at the end of the day, that’s what I did, and my mojo is back!!
16 thoughts on “The Scleroderma Chronicles: Getting My Mojo Back!”
Wow. Good for you. Here’s hoping things continue to improve for you.
Thanks! I feel like I’m gaining momentum and I’m certainly better today than I was 6 months ago.
I don’t know how you manage to keep your spirits up when you are faced with the pain and frustration of your conditions. Have you explored lots of alternative therapies as well. I heard putting cabbage leaves on sore joints can help, so I mentioned it to my mother in law…they recommend cabbage leaves to nursing mothers as well, pop one in your bra to stop mastitis. I think I’d be trying anything and everything no matter how random just in case.
Cabbage leaves? I will have to check that out! I wonder what the active ingredient is? I’ve learned to be very careful with alternatives therapies after hurting my kidneys taking tart cherry supplements, and the possibility of a drug interaction is always a concern.
Why oh why don’t doctors understand that they can’t feel what the patient feels?? I’ve lived inside my body for 50+ years. I know when something feels wrong. I’m sure you have the same feelings about that. Good for you to just move on and keep complaining. As for the cranky doctor, don’t just dump her without giving her the facts. As hard as it is you can help the next patient who complains to her. Maybe her mind will open a bit.
I spent a lot of time thinking about this doctor. It wasn’t that she wouldn’t listen to me, but that she was actually rejecting visible symptoms that didn’t fit her diagnosis and never inquired about systemic problems that she should have been monitoring like my neuropathy and gastritis. I know her job is a hard one as she deals with chronically ill people who are always in pain, but I’m getting a doctor who specializes in my condition.
I LOVE you, Marilyn! Thank you for talking about all of this and for explaining your thinking and your strategy for dealing with people who are basically telling you you’re crazy and hoping you’ll buy that instead of asking for answers they don’t have. I wonder how many earnest, important pursuits have been derailed by the experts’ saying that’s impossible, it can’t be, there’s no way to get from here to there. Your explanation is such an incredible example of humanness, self care, persistence, and clear reasoning that it needs to be required reading. In fact, I’m teaching argumentative writing this term, and I’m going to send my students here! Once again, you really are my hero. ❤️
I learned in the research lab that even very smart people suffer sometimes from a lack of imagination; my boss was often told that things were impossible, we went ahead and did them anyway, and when it worked they reacted as if they had somehow been betrayed by the universe. Invariably they would express something like “I was told that wouldn’t work!” It was a great experience for me and trained me to NOT rely on herd beliefs and to check on things myself. That attitude really helped me a lot as a teacher as I worked out instructional strategies that worked and abandoned some practices that I had been trained to use.
You’re teaching argumentative writing!? Wow. You rock! I’m flattered that you think I presented my case well. I’ve also been honing my skills by writing my congressmen and am considering approaching Kaiser with an argument that they need to put in place a system to manage/coordinate complex patients with several doctors and/or diagnoses. Let’s hear it for self care: I’m ready to go after the system to get myself a case manager!
If anyone can make change happen, I know it will be you!
So sorry that you are having this very difficult situation with one of your doctors! Good for you for standing up for yourself and working to find caregivers who can and will help you!
When it happened it was hard to understand WHAT had happened. It was like an attack. It took me days of reflection to sort it out, and when my brain fog went away I was able to make better decisions and pursued the help I needed. I’m grateful for the one doctor who stepped in to turn things around for me.
I’m so glad you are on track to feeling better and getting your MOJO back! Also having scleroderma, I just took a look at my CK numbers over the past 2 years, which only spiked when I was experiencing heart failure, the difference is my whole team acknowledges that I do have an inflammatory disease – perhaps a better marker to track would be your L D? Mine seems to better reflect pain and inflammation over the same period.
It has been suggested to me that CBD oil is supposed to be helpful not only for pain and inflammation but also to deal with autoimmunity – I did had a consult with a doctor about it who said it would not harm my kidneys or interact with other meds but haven’t tried it myself though.
I do hope you can find a compassionate Rheumatologist with expertise in Scleroderma and your other AI diseases.
Thank you for sharing this important message – we really need to take charge with doctors who refuse to listen, it is not easy, particularly when one is suffering and weak (when you need your doctor the most!) – glad the rest of your health care team came through for you!
After reading up on CRP my understanding is that it is a good measure of acute inflammation and also can detect worsening joint damage in RA, but isn’t elevated by fibrosis in scleroderma. My levels of CRP are always normal, and yet I feel awful and have visible swelling and other symptoms, so obviously there is another pathway involved. We used to joke about needing to put butcher paper on the wall in the hallway to chart out the inflammatory pathways we knew of when I was in the research lab, and that was years ago! Thank you for sharing that you have the same test results.
Three weeks ago I met with my congressman’s science specialist (along with other scleroderma patients) to ask him to sponser the sclerotic disease bill before congress. The other patients all experienced muscle/joint pain like mine and told me I looked terrible (!!) and needed to change doctors. Talk about a reality check! One of them urged me to get my diagnosis clarified as she thought I might have moved up to diffuse (I’m diagnosed with limited) based on the tight skin she could see on my upper arms and chest. My skin is tightening across my knees so I’ve wondered about this myself. Never a dull moment!
I tried CBD oil on my knees last year. Pain relief was fabulous, but my skin tightened down and was red and horribly itchy. I’m not sure I want to risk in my GI tract.
Thank you so much for your input. It really helps to hear from other sclero warriors!
Your strength and voice are a true inspiration. You give me courage to deal with what life throws my way 💕 I hope this inflammation treatment brings relief!
I am walking better this week, but I continue to be at the mercy of barometric pressure. 😜 I’m so grateful that I was able to retire early which makes it easier to roll with the punches! Thanks for your kind support.