Why do you see so many doctors?

Hello there. Thanks for stopping by today. If you’re a fellow spoonie you’re very likely familiar with just how different doctor’s appointments can unfold. You probably have your favorites sorry doctor’s but we do. You’ve probably also been questioned about why you continue to see a doctor if you don’t like the way that person practices medicine. You have had to explain that your insurance only covers so much or that that is the only person approved. For spoonies without ample cash flow, or on state funded health care in the US, medical care can be a bit like walking through a field of landmines…blindfolded. You don’t often get to see the latest and greatest. Where am I going with this? Well, last week I had two doctor’s appointments, both were to see specialists and for different conditions. The style of ‘care’ was so diverse I thought I’d share my experience for anyone else out there that is feeling like it’s worthless to keep going or keep trying. Because that’s another thing we hear…why do you keep going it’s not like there is a cure. Right, yes true, but with MECFS it’s often not our only condition. I started with Fibromyalgia and now have 10 new chronic illness diagnoses over the course of nearly five years. I would have never known this if I hadn’t kept pressing for care. So why do I see doctors I don’t like or that aren’t that great? Truth? Because they can order and read labs, and different specialist order different labs. Knowing the lab results helps me care for my body better. So let’s get on with it.

Appointment number one was with a Rheumatologist. With my health insurance I waited something like eight months a couple years ago to see this person. Also, other doctors have tried to refer me to different Rheumatologists since my first appointment with this person, several times. The insurance company keeps routing me to a location that doesn’t see MECFS patients for Rheumatology, so it turns into this vicious circle. So, I either see no Rheumatologist or I see this one (try explaining to disability why a person with MECFS/FM isn’t seeing a Rheumatologist), so I continue going. The appointment is nothing more than me showing up, them asking me my pain number, doctor walks in looks over labs if there are any, then prescribes medicine, even if I say I can’t take it (side effects). Last time I asked for a refill, and was asked how much I take, I explained I can only take a low dose because of side effects, which I seem to have with most medications as I’m super sensitive. The doctor then asked, “Can you just take more pills? You need to take more pills.” And proceeded to prescribe a much stronger elephant sedating medication, told me to take it three times a day (mind you this is a super strong opioid, which I’ve told them repeatedly I prefer to stay away from). And the doctor walked out. If you’re thinking I’m leaving something out, I’m not. If you think it was short and sweet because previous appointments had been thorough, also no. This doctor walks in, doesn’t explain labs even when I ask repeatedly, doesn’t answers questions, prescribes medicine and walks out. When I’ve asked about my worsening ANA results I’m met with no answers. It’s surreal, but it’s my reality.

Appointment number two is with a Cardiologist and it’s at the place I was referring to above that doesn’t see MECFS patients for rheumatology, but they will see me for POTS. This doctor is the third doctor I’ve seen there. The first one was in the first couple months of my illness when I still had fancy employer insurance 😊, the second one told me if I showed people my list of symptoms they would think I was crazy, and this last one, well, this person is awesome sauce. My questions are listened to and answered. Tips and compassion are offered. My quirky body is accepted as a reality of the illness. When I shared that thigh-high compression stockings were causing a lot of pain behind my knee there was no judgment, no scoffing, just an acceptance. When I brought up supplements, I was offered two other supplements that also might benefit. When I said I couldn’t get enough coconut water, it was suggested that that is probably my bodies way of saying I needed more magnesium. If you’re curious the two other supplements offered were NADH and CoQ10. After researching on my own it seems these two have been shown to be beneficial for MECFS (if you’d like to read more), which again, isn’t this doctor’s specialty, but this person was kind enough to step outside their box and offer some advice. It’s doctor’s like this that are the reason I keep going, I keep trying.

I know there’s no cure, we all do. It’s not about that. It’s about better understanding what is going on with your body. Chronic illness is scary, it’s heartbreaking, and I wish doctors understood and cared just how far a little compassion and understanding goes. We know our bodies better than anyone. If we say, for instance, I’m having a problem remembering things, and they say well during this appointment you seem fine, what they are really saying is I don’t believe you, and really they are gaslighting because they are also saying You don’t know yourself.

“Gaslighting is a form of psychological manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, it attempts to destabilize the victim and delegitimize the victim’s belief.”

But you do, you know yourself, trust yourselves and keep fighting on warriors. If you’re stuck with a doctor that offers you little to no care, keep asking for labs and if they refuse ask that your chart be noted that they refused. I’ve read that that usually results in getting the labs you need. Thank you for stopping in today. I appreciate that you took time out of your day to see what’s going on with mine. 🌸

More doodles 🙂

 

 

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29 thoughts on “Why do you see so many doctors?

    1. Strictly for MECFS the first Rheumatologist I saw gave me the best advice. The wisdom he shared still holds true today. He said… “There’s no magic fairy dust cure so don’t let people try to convince you otherwise. Living outside today will make you miserable. It could take two months or ten years to feel better, but maybe never. Find things you can do with your day, even from bed, don’t just sit and be miserable.” He was very wise and his niece had it so he got it on a different level. She had been a star soccer player and it stopped her in her tracks.

      Hoping today is treating you kindly🌸

      Liked by 1 person

  1. “There’s no magic fairy dust cure so don’t let people try to convince you otherwise. Living outside today will make you miserable. It could take two months or ten years to feel better, but maybe never. Find things you can do with your day, even from bed, don’t just sit and be miserable.”
    I want to see him…even though i don’t need a Rheumatologist. Fortunately after seeing many “ms specialists” I now have one that I love, and travel a great distance to see him. On the opposite extreme, my first neurologist pushed a wheelchair across his office and told me i should get used to that

    Liked by 3 people

    1. It’s so nice to read you have a doctor who practices in a way that is compatible with you! It really makes a huge difference, as I’m sure you know. I once had a neurologist ask me to walk down the hallway and as I was walking he said I walked like an 80 year old woman and pushed me!! He wanted to see how I’d react. What a jerk face. Never went back obviously.

      Hoping you are taking good care of you during this very busy but wonderful time in your life.🌸

      Liked by 1 person

      1. there has to be a way to report that kind of behavior! I didn’t think about it at the time, it just made me cry. I did have a “go around” regarding one of my grandsons nurses…. not letting people get away with that shit anymore. (i wrote a post coming out friday) hint hint

        Liked by 1 person

      2. It’s interesting how we let those things go for ourselves but mess with our children or grandchildren and watch out! Go get em, Grace!!

        Medical professionals get away with a lot with CFS patients because so many of us just don’t have the fight in us, the energy we have is being used to try to make our days as positive as possible. Hopefully someone with a little more in the tank will report him if he steps out of line again.

        Happy grandma-ing 😊🌸

        Liked by 1 person

  2. It’s just tedium par excellence isn’t it with some or even many doctors. I had a ‘lovely’ run in recently (excuse the word run). I’ve yet to send my email outlining my frustration at being treated like an idiot. But never mind, we persevere.

    I notice you mention CoQ10 & Nadh. I tried both a few years ago. But I’m not sure my body was ready. They seemed to increase the ‘manic brain’ & agitation. I hope you don’t experiencd that & have far more success with them.

    And I hope you have more positive meetings with Drs in futire appointments. Thanks for sharing your perseverence, Mishka. Xxx

    Liked by 1 person

    1. You’re so right, we do push on, stronger and wiser.

      I’ll let you know how the supplements work. I’m hoping for a little something, to even get back to baseline of last year would be a blessing. Do you find you’re sensitive to all medication and supplements? I sure am so I take tiny bits and try to increase slowly but it doesn’t work very often.

      Thank you for stopping in and I’m hoping Spring brings you better days.💙

      Liked by 1 person

      1. Yes definitely stronger & wiser. But I forgot to don my teflon armour on my last appt!😅

        Will be good to hear how you get on with the two supplements. I so hope they help improve your baseline. That would be brilliant.

        And yes, I do have to take great care with meds & supplements.

        The supplements I take now, took years to introduce. I think I struggled with coQ10 partly because it was capsule & I couldn’t divide it up. I was advised to take Nadh on an empty stomach first thing in the morning. I should have added it slowly like everything else, with my other supplements. But I was following a Professors advice, so thought he probably knew best. With slow thinking forgot to try a differently! Aagh! Maybe I should reconsider Nadh.

        I’ve recently had to increase pain relief. Hoping I don’t need to go up +2 tabs. ME is such a joy, lol!

        Wishing you better days this Spring also & all the best with the supplements.🌹 xxx

        Liked by 1 person

  3. your post hits very close to home. not only do i have chronic illnesses so do several of my children…….today we had a medical appt. with a new person and i was scolded the entire appt. for being a bad mom without her using those words. if you try to do one thing out of the box to help your child there are mds who freak. it’s bad enough when i am treated this way but in front of my children. i am still trying to calm down.
    so sorry you live this life too………it’s so terrible sometimes.

    Liked by 1 person

    1. I’m so sorry, Wendi. This is heartbreaking to read. You know your children better than anyone. Trust your gut. My son was slow to eat solids (he has sensory issues) and a pediatrician told me to starve him, eventually he’d eat. I thought oh gosh people probably take that advice to the bank. 😣 A medical degree does not make a person all-knowing, it makes them as educated as they decided to be after graduating medical school. The superiority that sometimes/often comes through in that profession is astounding. Just because someone has their juris doctorate doesn’t mean they know everything about law and the same holds true for MDs. Hoping today is better for you. 🌸 (mean people suck💕)

      Liked by 1 person

      1. thank you so very much for taking the time to leave such a helpful comment. first of all, mean people do suck! LOVE this 🙂 you are absolutely right, just because you go to school for a long time and get a title, does not allow you to play God. Our medical system is so broken…..patch you up ASAP and send you out without knowing anything about that person. Thank you for understanding……….it really helped me reading your words to make me feel like I am crazy! Bless you! 🙂

        Liked by 1 person

  4. I’m glad you had that one doc who stepped ‘outside their box’ with their treatment. I had similar with one woman, who said there was nothing she could do within the scope of what I went to see her for, BUT she thought I should be checked for Vitamin D and have my bones looked at… then discovered I was hugely deficient in Vitamin D and had osteopenia. It’s docs like those who go beyond who make all the difference. You’re right, we know ourselves and we have to keep pushing, investigating things for ourselves, seeing whoever we have to to try to get answers and new ways forward. Sometimes we need a breather because it can get more than exhausting, but we have to keep going. We owe that to ourselves.
    Wonderful post and, as always, fab doodles!

    Caz xx

    Liked by 1 person

  5. in Canada you’d think ( so ive heard the world thinks) that with our free health care we get “treated” well. I don’t want to complain as far as having “free health care” it’s great, of course we pay for it through taxes and with being mis-treated..for me too often.

    wont get into the countless times in my immediate family that a doctor, or several have misdiagnosed us, once 6 doctors to realize my son as an infant has German measles ( after his immunizations and I was pregnant with his sister at that) and for any doctor to realize my dad had cancer, by the time they did 2 years later it was stage 4 and he passed away, just to name a few.

    I was lucky my family Dr on symptoms alone knew to test me and what to test me for, started as FM & Hashimotos and now I am up to 1000 symptoms and 5 “conditions.

    That doctor went to Europe for a few years and the new one we are stuck with told me on my first visit without even looking through my novel of a medical file that I am fine, my iron levels are fine and I can take a supplement to up them…I stood my ground asked for a specialist, was referred to a endocrinologist who treated me for over a year just to watch my anemia get worse shetold me she cant do much more and sent me to an internalist.

    I also have gone to a natural path which I have mostly insurance coverage for but not all.

    my endocrinologist sent my new family dr a “nice” letter outlining how sick I am, he fakes concern now.
    My internalist took one look at my file and bloodwork and told me I need Iv iron transfushions, no amout of meds will work, not even the overdose dose I had been on for a year while my levels dropped.

    I had that transfushion in October, 2 weeks ago my iron is at 12 ( normal is 10 to 95)
    I need to get to 10 before our free health care will pay a nurse to administer more IV iron, even tho I have to pay for the medicine itself and have no option to even pay for the nurse if I wanted to ( which of course with cost probably couldn’t)

    when I say normal range is 10 to 95 that’s a broad range because if you are in the mid range at 50 they start to get concerned, in the low 20’s my original family doctor was really concerned even calling me after hours to make sure I was taking the meds right because my levels kept dropping.

    RANT OVER thanks for reading

    yes I understand needing so many doctors for different symptoms and illnesses its not a one size fits all, and if we get someone incompetent we should have the right to ask for someone different, they are not god and make mistakes, unfortunately too often

    Liked by 1 person

    1. Thank you for sharing your experiences. I had a friend live in Canada for awhile and loved the healthcare but she wasn’t chronically ill. I know healthcare around the world has it challenges. There are so many illnesses which are not understood. I’m sorry you are on the journey of the misunderstood along with so many of us. Compassion from a Dr can mean everything even if they tell you there’s nothing they can do to help, it still helps to feel acknowledged.

      I’m sorry about your iron levels too. I’m struggling with mine as well. My body just won’t absorb it no matter how much I put in there. Hoping they can help you, and soon!! Keep fighting for yourself! I know it’s exhausting, so exhausting, but taking it day by day helps. Hoping today is kind to you🌸

      Like

      1. Day by day is how ive learned to cope. Hearing u and so many others say they take iron all kinds and dont absorb helps me because no one has explained to me whey yet but at least i know im not alone. I think my body has decided to attack the iron now too so time will tell how i will be treated for it.

        Liked by 1 person

  6. thanks for posting about the supplements! I already take CoQ10 (beta blockers deplete CoQ10, so everyone who takes beta blockers should look into supplementing with it). I am not familiar with NADH, but will look into it.

    I wonder if we see the same cardiologist – I also love mine 🙂

    Liked by 1 person

    1. Welcome 😊 Trying to spread the word since my experience has been that I don’t get many tips from healthcare professionals.

      My Cardiologist is an Assistant Professor at UCSD. I know Dr Taub (the 1st one I saw in the group) was doing a study on POTS but I never gathered further details. So nice to have a proactive and compassionate Dr.

      Hoping you’re enjoying the beautiful day today😎

      Like

      1. My pots cardiologist is with scripps. I did the study with Dr. Taub. She was very nice, but didn’t know as much about pots as I would have expected. But I appreciate that she’s trying to learn, since most doctors are not.

        Liked by 1 person

  7. Wow I absolutely was so encouraged by your piece. I have had every single thing that happened to you happened to me over the course of the last 11 years. And I got to a point where I was not gonna listen to certain doctors anymore and I would just stop seeing them in look for someone else. But at 1st I took them at face value thinking whether the doctor they know. But now I see that there are so many and uncarying ones.

    The frustration that comes from living in a small town like where I live is even more frustrating as I drive a minimum of 50 miles North or South to see doctors. There are no specialist in my small town of 17000 give or take. I drive sometimes a 100 miles 1 way to get looked at like I’m a hypochondriac. It’s so frustrating that I even just stop seeing a doctor for a long time and was on 0 pain medication. To be quite honest I still don’t have a doctor for my fibromyalgia but I do have one for my degenerative disks and thankfully had finally found a therapist & psychologist that are caring, understanding & great listeners. So I am on a quest to find a pain doctor who believes fibromyalgia is a true condition & can treat me. Thanks for the post fellow spoonie. I’m inspired to write my experience with Stanford Medical Hospital in San Francisco. As aggravating & heartbreaking as it was at the time, I look back and laugh now at how ridiculous it was. Have a good day!

    Liked by 1 person

    1. I’m so sorry you can relate, I wouldn’t wish these experiences on anyone. My mom lived in a small town with chronic illness and faced similar struggles. It’s very limiting, and as you know first hand can be so frustrating. I’m hoping you end up in good hands with a treatment plan that best meets your needs. We all have such different experiences and the one size fits all treatment approach certainly does not seem like the way to go, at least with FM and MECFS. Thank you for sharing, it helps knowing we aren’t alone with these invisible illnesses. Hoping today is kind to you 🌸

      Liked by 1 person

      1. 🌷🌷thank you. Your very kind. I’m sorry about your Invisible Illnesses. I hate these, but blogging, reading others like your blog & getting wonderful comments like yours. Have a good day.🌷🌷💜💜💜💜💜💜💜💜

        Liked by 1 person

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