Welcome, folks 🙋🏻♀️ I was trying not to vent over here on my blog this month, but now it’s bottled up and here it comes, spraying all over the place like a freshly popped bottle of champagne.🍾
Gosh I miss champagne.
So, what has me all riled up? I’ll give you one guess… Did you guess doctor’s? If so, go ahead and pat yourself on the back. Those of you with ME/CFS may not be at all phased by this, those of you with other illnesses probably won’t be phased either, but those of you lovely people without chronic illness, well, first of all thank you for reading!, and secondly this may be a little shocking.
Here goes nothing. Last October I saw a new specialist, this was after an ER doctor told me in April that I needed to see a different specialist than the one I had been seeing and my health insurance company proceeded to take six months to refer me someone who would actually see a patient with ME/CFS. Wondering why? Well, doctors consider us a waste of money, or so I saw on several ME/CFS films. They can’t treat us, we keep coming back over and over with the same complaints and there’s no one cure so big pharma hasn’t gotten their grips on us yet. I believe once there’s a drug that will cure us (Yay!) we will suddenly become worth seeing ($$$) but for now doctors seem to dread us. Anyway…back to October, I’m filled with hope after seeing the new specialist. He seems knowledgeable, friendly and in no way condescending. He runs labs just like they all do but this time things come back out of range, and this brings on a myriad of emotions for me. With this illness labs tend to come back within range, that’s one of the struggles with it, so the fact that things were out of range was honestly freaking me out. I started down the path of was there something else wrong? Is my body starting to fail from fighting for years now? I apologize for the redundancy by the way if you’ve been regularly following along with my blog, but felt the back story was needed here.
Fast forward to the first follow up appointment, wherein the doctor tells me, “Yeah stuff is out of range but it’s already stuff we knew.” Now hold up – I get the labs on an app on my phone. They are not things “we” already knew. No further explanation is provided, but several prescriptions are written and I’m told to do more labs and come back in a month, so I do. Again, more labs out of range. But guess what happens at the follow up. Nothing…yeah “stuff we already knew”. Wait…what? Just “come back in a month for another follow up”. Meanwhile my anemia is knocking louder and louder and despite my labs showing anemia he is saying yeah, I don’t think it’s anemia. Sigh. Okay. So next follow up ends of being with a PA, who realizes this is complex and brings in another doctor, who runs a vast number of tests and says I should be seen by an infectious disease doctor. Yeah, I know that but my insurance won’t approve it. If you’re wondering why you and I have something in common. So they say due to my fever they will try to get approval for me to see an infectious disease doctor, which they actually do end up obtaining. Once again several of the labs come back out of range. So, I prepare for this next visit thinking I’m going to finally get answers. Nope, the doctor doesn’t even know what some of the tests were for that the other doctor ran!! And still provides no explanation. “See you in a month and here are more scripts”. Folks this is seriously happening to me. At this point I’m beyond frustrated but I have an annual exam coming up so I think I will take the labs to the GP to have her explain them to me. Ready?
GP walks in the room and I ask her if she would mind looking over labs from doctor her office referred me to as this is a well-woman exam and where the woman is supposed to check in and make sure ‘everything’ is going okay, or so it says on the website for her office. She says you can do one or the other but not both, exam or labs. I feel the anger in me rising like an overflowing sink. I’m furious, and if you know me, you know I rarely ever get mad, let alone furious. I’m done. I look at her and say, “Well part of these labs is an urinalysis with many things out of range so you WILL look at that part and you WILL do the exam.” She didn’t say anything, looked over the urinalysis lab (ignoring the next page she looked at which showed low red blood cells, hemoglobin and hematocrit…how is this not malpractice?) and said she’d repeat it so I could take those results to the other doctor next time I see him. She never addresses the anemia, even though again this is a well woman exam. At this point I’m so defeated and tired I could cry, in fact I came home and cried, also something I don’t do. So, I repeat the labs and the results are the same. I do not have a UTI by the way, it’s something else, just in case you were wondering.
At this point I’m thinking the definition of insanity is doing the same thing over and over and expecting different results so I decide to change my approach and I print all the labs from the specialist since last October, as well as the urinalysis results from the annual exam. I’m ready to find out what they all mean at my follow up with the specialist, which was yesterday.
Now honestly yesterday I felt absolutely awful, PEM in full affect. My spine pain alone was horrid, let alone everything else, but I did not want to reschedule this appointment, I wanted and needed answers. The doctor came into the room and I asked him to go over the labs. He started looking at them. There are maybe 10 pages, maybe. He gets half way through and says, “These are ones we ran here?” To which I nod yes. He then sets them down and changes the subject, eventually asking if I’ve been to see the infectious disease doctor to which I have to explain to him that no I haven’t because I was referred to UCSD (they are actively researching ME/CFS) and they do not see people with this illness. He says well with your insurance I guess we’re out of luck. In other words my insurance will only cover me to see an infectious disease doctor through UCSD, who doesn’t see people with my illness. Seem fishy? Anyway, I pick the labs up again and say actually I need to know about these ones specifically, pointing to the red ranged labs, and he says well we will re-run the urinalysis (3rd time for me) and I don’t think you should take iron. And he got up and left. Nothing, no explanation, just two new prescriptions.
Now you may be wondering why I’ve put up with this for so long and why I don’t push harder for answers. Just in case you are, here’s the inside scoop. He is seemingly one of two rheumatologists my insurance seems to approve of…remember it took six months for me to get in to see him. And regarding pushing harder, within my envelope of energy I have available to me, I’ve called, I’ve asked repeatedly, but I didn’t want to drag this blog out for weeks with all those details. If you’re wondering anything else, please feel free to ask. You may have a great idea I haven’t thought of…
I’m left wondering, is this because I’m a female, is it because I have an illness that’s not well understood, is it because…what? I don’t know. I simply don’t know. I feel like it’s not out of line to expect an explanation and treatment for out of range labs. There’s a part of me that just cannot believe this is happening. If it were happening to my son I’d probably do more, say more, something, but the truth is when he goes to the doctor, he receives great care. They listen him, they thoroughly explain things, they are respectful.
In a couple weeks I have a follow up with my GP. I am going to take all the printed labs, again. I’m not really sure what else to do. This is why people with ME/CFS stop going to the doctor. This why people with this illness give up. This is why I’m writing this blog today, because unless we speak out, we will never be heard, and unless these doctors are exposed for their treatment of us, it will never be known. I will not remain still and silent, I will not go down without a fight. I’m not alone in being treated this way. I’m literally 30 health care professionals in at this point. I had one, yes one, good doctor and he too turned away. It’s not right folks. Someday the cause, and cure for this illness will be discovered and people will say remember when…about ME/CFS. I try to stay very positive for my health and happiness, but sometimes you’ve gotta pop the cork,🍾 and then move on. 🙋🏻♀️ Life’s too short to let meanies bring you down.
Thank you for reading along, I appreciate that you took time out of your day to join me for my rant. A few more of my little paintings below.