I haven’t been blogging all that much about my chronic conditions lately… the truth is, I hardly know what to say. I’m sick. I still struggle every day. I’ve been making a lot of adjustments over the last couple of years as I tackle never-ending obstacles, but I really don’t dwell on things too much and I don’t make too many demands of my doctors. I’m still happy, busy, and I manage work-arounds for lots of things that I want to do. Then suddenly this winter I realized that I wasn’t doing all that well after all.
Background: For several years I have been consistently complaining to my doctors that I am short of breath, fatigued, itching, rocking blue lips, and not quite right. My doctors are all like… hmm… that is interesting. Well, it isn’t (insert specific issue that this doctor treats me for), so I’m not sure what to do. We’ll keep monitoring… Maybe you should ask this other doctor about it…
This last December I really hit the wall. I was so exhausted that I was afraid to go shopping by myself. I ended up on the floor panting for air more than once. I collapsed in the yarn store. My lips were blue. The itching drove me crazy. Something in my side hurt and strange bruising kept popping up. Fainting suddenly became an issue again.
I went to my internist and told her what was up and she immediately ordered several tests. Some scary things like lymphoma were ruled out, but others suddenly reared their ugly heads. I have way too many red blood cells and too much hemoglobin. My cell count spiked to its highest last December when my symptoms were at their worst. Suddenly a new diagnosis was placed on my chart: polycythemia.
Now the fun really begins. I have a lot of things written on my chart. I am diagnosed with several autoimmune conditions: limited systemic sclerosis (scleroderma), Sjogren’s Disease, and fibromyalgia. These diseases come with a boat load of complications as they tend to cause trouble everywhere they go: I have stage 3 kidney disease, lung disease, hypertension, Raynaud’s Phenomenon, gastroparesis, tendon damage, bursitis, several crazy eye issues, fluid around my heart, and a stomach that has herniated partly into my chest. Seriously, who knew that was a thing? Actually, my whole GI tract is in trouble. My muscles hurt and the joints are swollen. Do you see how confusing treating me can be when a new medical problem emerges? No one wants to rock the boat! My diagnosed conditions actually make it harder for me to get good health care at this point. I know that I am a high risk patient, but this is ridiculous, doctor people!
My internist checked to see if I had the very serious and rare version of polycythemia called polycythemia vera, and since my hormone levels were normal she concluded that my polycythemia was being caused by an underlying condition, and we should just monitor my red blood cell count in ongoing routine rheumatology blood work.
What? Wait… what about my blue lips, panting and all the other symptoms? My immediate reaction was… OH, NO, WE ARE NOT DOING THAT!!! I am done with the ending up on the floor panting every time I try to do something reasonable like… say… cooking dinner! I dusted off the biological researcher part of my brain, generated a list of essential questions, and did a bunch of online searches to see what I could find. The trick to this is to have good questions and the right seach terms. As I worked, things became more productive. Wow. I learned a lot and now I had more questions for my internist. I wrote her back an email with a bulleted list of questions that… she never got. She’s on vacation. One of her partners looked at the email, became alarmed by my symptoms, and called to urge me to head to an ER immediately (!!) to be evaluated. She was pretty insistent…
Which kind of proves my point! Anyone else who ended up on the floor with blue lips, panting for air, because she tried to vacuum the living room would receive timely medical intervention!! This is not reasonable. I’m not getting the care that I should because I am too complicated and there are too many doctors involved. This has been going on for three years and now it is worse. Did one of your parents ever say to you when you were a kid misbehaving in the backseat, “Don’t make me pull this car over!” I am now pulling the car over and stopping this ride.
Tonight as I write this I am just hours away from a phone appointment with my internist. I have my questions ready to go. In the afternoon I have another phone appointment with my pulmonologist; I plan to tell her about the new diagnosis and to ask her about testing that I should have to help identify the underlying cause of the polycythemia. Maybe she will have some other ideas. Tuesday morning I have an appointment with my new rheumatologist and I hope to pass all of this to her. This rheumatologist specializes in complicated cases, is recommended by the Scleroderma Foundation, and prefers to personally coordinate the entire care team. Yay! Here I come! I am the girl for her!
There are many things that are happening to me that are upsetting: my hair is falling out, I have a rash on my face, and I now use a cane to get around. This is the kind of stuff that makes you want to sigh and stay in bed some mornings. You wish it wasn’t happening to you. It’s upsetting.
Then there are things that are just down right concerning. In my mind a red flag pops up and a small siren goes off: strange and unexplained bruising, double vision, pain in my left side, blue lips, panting for air while trying to open a door, tremendous itching after showers. This kind of stuff is a call to action; get out of bed and deal with it! I am now mobilizing all of my energy towards GETTING TO THE BOTTOM OF THIS and securing answers, treatment, and hopefully, an improved quality of life.
Because there is a difference between upsetting and concerning. I am not upset, but I am concerned. I am mobilized. I have questions and I want answers.
I am totally over the blue lips look!
I’ll let you know how this all works out. It should be a busy week.
21 thoughts on “The Scleroderma Chronicles: Upsetting vs. Concerning”
I really hope you can get some answers and proper help!
My boyfriend has the same problem with doctors not wanting to treat something because of his other health issues, it frustrates me no end so I can only imagine what it’s like to be the person actually dealing with it.
It’s like there are so many possibilities for what is happening that they are actually immobilized, or they test for one thing, and when that test is okay, they are like… you’re okay. The test was negative… Um, no. Still blue faced…
It probably sounds simplistic but have they ever mentioned some sort of reaction to one of your medicines might be causing some of your latest symptoms. I hope they sort it out. It’s very frustrating but let’s hope your new rheumatologist is on the ball. Her co ordination of all the care aspects sounds positive doesn’t it? It sounds like a common sense approach. Let’s hope so.
You are so awesome… that question about the drugs is one that I also asked. As it turns out, one of my drugs has polycythemia as a reported adverse reaction!! I’m going to take that to the rheumatologist tomorrow. This isn’t a drug that i can just stop taking as it’s my immunosuppressant and is basically saving my life. Time for another option, maybe…
I’m sorry to hear that you are suffering. No one should have to deal with all the medical coordination while feeling miserable. Your doctors should think of themself as an orchestra and they need a conductor (the new neurologist maybe) to insure everyone is playing the right songs at the right time for you.
I hope they find the issue and you feel better:)
I am so counting on the new rheumatologist taking that role, although my internist is pretty darn good. It’s like a complicated dance as the doctors shoot me back and forth between them. Ugh!
Good luck getting some answers. Maybe you need a rule of three…If you three new “monitor” symptoms, you start seeing the doc or go to the ER. If the symptoms increase in severity, (not even by three), get yourself in…or if you add in three new workarounds, you schedule an appointment. It’s not perfect, it won’t fix everything, by any means. However, it could help avoid you ending up on the floor or being afraid to go grocery shopping alone. And tell those doctors, three “interestings” means they need to do research in their own field. I hope you feel closer to normal soon.
Oh, it is just shocking, but that won’t work for me. All of this started this round when I contacted my doctor about new, serious symptoms. Amazingly, after working the problem for 2 months, I’m still where I started. Today one of the doctors openly disagreed with the diagnosis that my internist made and acted like nothing was wrong. I managed to redirect the conversation back to my symptoms and away from the diagnosis, but it was interesting there for a few minutes. There is another post coming after tomorrow’s appointments…
I have gone to the ER, and that didn’t go very well either. Once they don’t find a blood clot they kind of give up…
I am happy to hear you have found a new rheumatologist. I hope that she will be the kind of lead doctor you need. Prayers for answers and a plan to get you feeling better!
I was really happy to get into her practice. I meet her tomorrow!! I need a doctor who can coordinate my care something awful, although my internist does a pretty good job at it.
I hope you have a great appointment with her, tomorrow! It will be a real relief for you to have a doctor who can coordinate everything for you. 🙏
I hope you can get some clear answers this time.
Me too! This is so challenging, but I am no longer willing to settle for the status quo. I already have a bunch of new tests ordered after the first two phone appointments.
I hope some answers can be found for you and that you will feel better soon!
Me too. I made it through the first two appointments today and three tests were ordered and we discussed a new referral to a cardiologist. Tomorrow get to take all of that to the new rheumatologist.
I’m sorry you are dealing with all of this. I hope you get your questions answered. I really wish we had people who could help guide people and be a patient helper to deal with multiple health issues.
I have often thought that there should be a person just like that to help coordinate care and to organize resources when people are juggling multiple doctors and complex health issues. When you get to palliative care you do get a social worker who does all of that for you, but some of us need it sooner!
It seems like something anyone with more than one doctor could use. When I win the lottery I’ll start a foundation that helps people before palliative care.
I’m assuming they tested your heart, because shortness of breath, collapsing, pain on the left and blue lips would definitely get you hooked up to heart monitors in our hospital here. You have conditions I’ve not heard of, ones that a friend has and my mum has a hiatus hernia so I knew that was a thing. I can’t imagine how you have the mental strength to deal with it all, you are one tough cookie and I agree with Karen, you need a conductor for your medical condition orchestra you’ve got playing. You need to find they guy that exists that is like Dr Gregory House from the TV series ‘House’. Now he’d probably sort you out. Is it worth trying to see if someone like that exists for real?
I am so sorry you are going through all this! Hoping you start getting some resolution and answers!
Really hoping you get your answers with the new rheumatologist!