‘It is the calm and silent water that drowns a man.’ ~Proverb

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.

34 thoughts on “‘It is the calm and silent water that drowns a man.’ ~Proverb

  1. I’m sorry Mishka, that’s awful. I had to virtually explode at a medical practise last week. In fairness a Dr did come & see me when I explained it had been 5 months since I’d been able to get time away from the house. But why oh why does it have to be like this. Do you have a friend who could go with you to your next appointment for backup & help refuse a no? It sounds like you need some backup. Sending hugs your way & I hope is a lot more proactive very soon. 💖 xxx

    Liked by 3 people

    1. I never go alone, ever. This is with backup. It’s surreal. But I’m so scared he’ll just stop seeing me I try not to ruffle his feathers. Can’t wait to put this all behind me. Not sure how or when that’ll happen but it’s what I tell myself to keep my spirits up. Thank you for stopping in to read. Hoping today has been best as can be for you.🌸

      Liked by 3 people

  2. Doctors never seem to care about low hemoglobin or ferritin. My ferritin sits chronically so low I see other spoonies getting iron transfusions, and I get “take an iron pill.” I’ve been taking them for eight years and I’m still chronically low hemoglobin and stupid low ferritin. Argh. And that’s just one of my examples. I’ll fall over in shock the day I meet a spoonie who has had more good doctors then irrelevant or bad/condescending ones.

    Liked by 4 people

    1. I have had the same experience with ferritin! Constantly told to take iron pills, and when my ferritin wasn’t increasing, was told “take two iron pills”. I know quite a few people who get iron infusions who had a much higher ferritin level than I and wonder how. My ferritin has finally increased after 10 years, but if I forget to take iron one day, it plummets again.

      Liked by 3 people

    2. I tried taking folate, I think, but I have the mthfr gene mutation and it made me really unwell. He specifically told me not to take iron. However! I have been taking two teaspoons of black strap molasses daily and drinking bone broth daily. My homeopath recommended this early last year and it raised the levels so I stopped. If it was only the anemia I wouldn’t be so concerned but there are tumor markers and other stuff coming up out of range. 😐

      Not sure if you are a vegetarian but the beef bone broth, frozen from health food store, really seems to help me. Just passing along what’s worked for me 😬 I know we are all different. And yes I so agree with you the kind ones are the exception. I don’t think it was always this way… Hoping all is well as can be with you🌸

      Liked by 3 people

  3. How frustrating! I’m so sorry to hear you’re going through this. I should be surprised that doctors are not taking your results more seriously (especially if they include anemia!!), but after years of seeing doctors that repeatedly brush off my abnormal test results, I’m not. Can you appeal to your insurance company to see a different doctor?

    If you were referred to UCSD, we must be close 🙂

    Liked by 4 people

    1. Wow! Well, I’m glad to hear it’s under control for you for now. He’s told me not to take iron so I’ve been taking black strap molasses and bone broth. I have the mthfr gene mutation so I’m sensitive to, well, seemingly everything right now. 😐

      I will be switching things maybe next month. I just don’t have a lot of energy to jump through all those hoops so I tried to stick with it but I’m pounding my head against a brick wall now. If it was only anemia I wouldn’t be so concerned but it’s other stuff that is very concerning to me.

      I live about five minutes from UCSD.

      Hoping all is best as can be with you! Thank you for having a read and sharing your journey.🌼

      Liked by 2 people

  4. I’m so sorry you’re having to deal with all this. I can only imagine how stressful it is. You’re right – it’s unfair that you can’t get the help you need, and also that if we don’t speak up when we get substandard care, things will never change. I really hope you are able to get the care you need and deserve soon. Gentle hugs to you sweet friend!

    Liked by 3 people

  5. After reading your post and everyone’s responses I feel very overwhelmed myself. I’m sorry. Can I throw a couple more things into the mix? My understanding (I’m sorry if it’s wrong) is there is no cure, so like MS they do symptom management? For me, my GP does nothing but send me to other places…a neurologist for MS, a urologist for ms bladder, a gastro for bowel issues…and so on…even though most of this is blamed on MS. I know it might seem futile, but have you considered writing a letter to one of the doctors where you want to be seen, asking if they offer any kind of “probono”? For me, my neurologist is 2 hours away, so he sends the requests to the other docs that ARE “in network”

    Liked by 2 people

    1. That’s a great idea! I hadn’t thought of that. And no, just like MS no known cure, just management. My stumbling block is even after googling the lab results I still don’t understand enough to determine which specialist it would be, although I can guess (probably oncologist) I’m not sure. I will get there though.💪 It just doesn’t seem like it should be this way, and yet it is. I have such limited energy and I don’t want to use it chasing my tail, I have painting to do😉😁 Hoping you are best as can be! It looks like the wedding went off without a hitch! If I remember you’ve a trip coming…hoping it’s an absolute blast!😊🌸

      Liked by 2 people

  6. OMG. You are living a nightmare! The incompetence is staggering. Seems like every doctor is passing the buck to the next one. It’s infuriating. I am so very sorry you are experiencing this. I absolutely hate that you have to keep pushing to get anyone to take you seriously. I work in an academic health center (as a writer) so I do know many doctors are afraid to give a patient bad news or to deal with a complex case so they just push the patient off to another doctor. Sad and infuriating. I wonder if UCSD (I’m guessing this is a university medical center) has a patient advocacy office like we do here. They and Risk Management (i have a dear friend who is a risk manager where I work so I know from her) can help in situations like this, if they are any good. Patient advocates are supposed to help you navigate and get answers when you have clear medically documented problems that no one is dealing with. They can be care brokers. And Risk Managers hate to hear about cases that could become malpractice cases so they can step in. Just a thought. It’s helped me tremendously. I had a radiologist sit down with me and go over my CT and MRI in great, very kind detail. It made such a difference. And sometimes I’ve had a nurse from the insurance company intervene. I called them in tears begging for help and the nurse and a claims specialist got on the phone with the doctor’s office and read them the riot act with a lot of “we won’t pay if you don’t help her” thrown in. Again, I am so sorry you have to deal with this!

    Liked by 3 people

    1. Thank you so much for sharing this information! I did not know these types of people existed. I’ll definitely be looking into this. To know they exist restores my faith in the system. I’m so glad you have had advocates that have stepped in for you! It can make all the difference. Thank you for reading and sharing your experience and wisdom. Hoping all is best as can be with you.🌸

      Liked by 2 people

  7. Loving the hatched chick! …I’m sorry to hear of all your recent struggles. I know how tough it is to deal with doctor’s offices, communication issues on all sides, insurances, tests, etc. It can be too much to deal with at times. Too bad we can’t have a break when we need one! *Hugs*

    Also, my blog has moved. If you would like to continue following me, pleases subscribe on my new website. Thanks!

    Liked by 3 people

  8. Wow! What a frustrating journey you have in your medical system there!
    We have free public health/medical here (although we are one if the highest taxed countries in the world!), we can pick & choose our physicians clinically but not surgically (unless we pay for private health insurance). Which I have never had any issues with. As have always been given the top surgeons or specialists in their field.

    Have you tried the online Dr’s for explanations, some are free.
    I know with some lab results… that unless they are combined with other red markers on your results, they don’t worry.

    I hope you enjoy your the lovely moments of Easter with your son, 😀
    Jennifer

    Liked by 2 people

    1. Thank you, Jennifer, for your kindness and information. I’ve never heard of an online Dr. I’ll have to check that out. Wishing it was only one red marker, but it’s groups. More labs yesterday, fingers crossed for some turn around. C’mon miracles.✨🌸 Wishing you and yours a lovely Easter weekend.🌼😊

      Liked by 2 people

  9. Emma (Not Just Tired)

    So, so awful. I’m sorry you had such a terrible experience yet again. It really is horrendous how little help, care and support we get. I so wish it was different. I still try and hope that one day things will change, but it’s so demoralising going through these useless doctors appointments. I really wish I had something helpful to suggest, but I can only say I know how you feel and send you my support xx
    PS I’ve been adding wheatgrass to my smoothies for extra iron – I know that’s not particularly helpful but just thought I’d say!

    Liked by 2 people

    1. Thank you for your kindness, Emma. 🌼Sometimes it helps just to be heard. Read a great interview today that I’ll try to post to FB. It’s between Cort and a retired CFS Dr. some good info I think. Never heard of the wheat grass but will check into it! Wishing you and yours a lovely Easter weekend!🌸😊

      Liked by 2 people

  10. Gosh, this must be maddening! 😦 I am so sorry for your struggles. I can fully relate to your insurance-approved doc issues… I will have to change my GP too because the current one is not in-network. And this was the first GP who heard me out, saw a pattern in my myriad problems ailing me for years, and worked with me to find a diagnosis and then a decent treatment plan. It NOT nice to be bounced around from one professional to another, who often don’t act professional and then not even get the help and answers we deserve.

    Liked by 1 person

  11. Dune Drifter

    Sorry to hear what you’re having to put up with, I hope you manage to get the right doctor.

    Unfortunately, mine is a similar case, and it is sad to say, we are not alone.

    Ten years into this horrible disease, and I’m still waiting for certain tests to be done and results to be explained, it seems getting ‘labelled’ doesn’t always mean ‘we’re’ closer to fixing the problem, this appears the case for me/cfs fibro.

    Best Wishes Mark Page (Dune Drifter is my painting alias).

    Liked by 1 person

    1. Thank you, Mark. For stopping by and for your kind words. I think it’s this constant state of shock and disbelief that globally and collectively we are treated this way. I’m not one to ruminate but this has been unbelievable, truly unbelievable. Sometimes I can’t believe it’s really happening, not just to me but to so many of us. I’m so thankful to have found this online community for a variety of reasons but mostly because it’s important to know all of us aren’t alone in this experience. Ten years 😐 I’ve had FM for 14 and CFS for nearly four. Hoping the cure is near, lord knows we all deserve answers and treatment. I believe it’ll be sooner than later🤞

      Liked by 1 person

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