Friday, June 9, 2023

Your Body Knows Best!!

Greetings and Salutations to all my Fight Like a Girl members!! I hope you are all feeling well. I have been a bit under the weather (yes I know you are stunned by this shocking revelation! LOL!).

Last week I decided to go to a cardiologist because my blood pressure was a bit high, for me anyway… I gauge it by my monthly visits to my pain management doctor and noticed that my systolic is always between 106 and 117 and then it suddenly jumped to 143 two months ago and 187 this month! I was a bit wigged and even though the pain management nurse and PA told me it was nothing to worry about I just felt my body saying “Something’s not right… AGAIN!”

My body and I have lots of conversations and I trust my body more then I trust people with fancy degrees! If there is one thing I have learned since I’ve been sick, it is that YOU MUST BE YOUR OWN ADVOCATE FOR YOUR HEALTH!

Well sure enough, my body was right! As the doctor looked at the results of my EKG he suddenly turned and said “You need to be admitted NOW.” I thought he was kidding and told him it was not nice to scare new patients that way but as it turned out he was not kidding. I found myself rushed to the hospital and admitted into the Cardiac Care Unit. I was in awe at the fact that something like this was happening to me. They were concerned because my resting heart rate was 139 BPM and my systolic BP was nearing 200. (A normal resting heart rate is between 60 and 80 and BP should be no higher then 125-130).

I wound up having a heart catheterization and while there was mention of putting in stents he decided against it at this time due to potential complications from my having vascular EDS (Ehlers-Danlos Syndrome) and will try to treat me medicinally first. The blockages were not clear and the doctor was going to review the procedure films. The bonus to all this drama is that for the past few months have had some “pin pricks” in my chest that I assumed was gas so I would open a can of soda, chug a few times and burp it away, what was discovered by my cardiologist is that it is not gas but in fact my heart muscle is having muscle spasms that cause this chest pain, can you believe it?

I went for my follow up this week to discuss test results and course of action and address the numerous meds I am on. It turns out that my arteries were so inflamed they swelled and in some placed swelled shut making it appear that I have blockages. I am on meds to control that and to slow my heart rate down and with that my chest pain should subside. I am hoping and praying that we can fix me with just these meds and without any other surgical procedures.

I am home on bedrest and with all my sweet furbabies who are so loving. They missed me while I was in the hospital, almost as much as I missed them!

So this weeks lesson, is that YOU know your body best. Even if a medical professional is telling you not to worry, if your body is insisting otherwise then you need to take matters into your own hands and go seek medical attention elsewhere immediately!

As previously warned, I want to end each entry with a close out question. My question for this entry is “Have you had an experience where your body told you something was wrong when a medical professional told you otherwise? If yes, what did you do about it and what was the outcome?”

I hope everyone remains in good health!

Peace and Paw Prints!

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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  1. Anna

    I hate to say it but almost everything I have been diagnosed with. When my body says something wrong it IS. My gut just knows. I have had to study and self diagnosis do many things. Them convince Drs to Listen. It’s happening now with POTS. But I fought for 6 months and now they agree with me. My tilt table test is Monday. And I MADE it happen with one of the defining researchers on the condition. So I must agree fight. Only YOU Know your body. And when were sick I think we become more finely attuned to listening to it.

    • Cristina

      You are a miracle,!!! A woman, who against all odds found proper care and Doctors willing to look beyond the average tests because you knew your body was NOT performing normally. II think many of us sit with a cup of coffee, tea or juice in the morning and relax quietly, enjoying the moments before the household wakes up or we get ready for work and at that time we ALL know what we feel in general. It is because of your incredible story and advice; that you give SO simply and FREELY, to us that others are able to survive this catastrophic disease also. Your simple mention of how you FELT OFF. We all can understand. At least, those of us that are a little older and have gotten to know ourselves.
      If you have not taken the time to quietly LISTEN to your body when you are well; listen to

      • Dani

        Thank you for supporting Mary in her story, I truely believe that we can find our strength to cope and overcome the challenges we face when we know we are not alone in facing them!
        I wish you strength and peace!

    • Dani

      Hey Anna!
      I am so proud of you for keeping up your fight for answers when no one wold listen! I hope your tilt table test went well (they are not pleasent!) I hope you get the CORRECT answers you are looking for and I wish you the best of luck and strength and support!! Hang in there!

  2. Mary Dunn

    I sent this one to the doctor that saved my life. After other doctors told me I was having classical migraine headaches, my eye doctor listened to his inner voice and researched my symptoms till the wee hours of the morning and found my carotid dissection the next day. This was after an ER doc told me my eye doctor was ok, but I needed to see “a real doctor.” And my GP told me I didn’t need any more expensive scans that was why everyone’s ins. premiums were going through the roof. Glad I listened to my body and the one doctor that cared enough to look for the zebra. After having been diagnosed with a massive carotid dissection I was sent to Emory University Hospital in Atlanta, Georgia to see a vascular surgeon. Dr. Bill Smith looked at the MRA, shook his head and said, “Wow, I can’t believe your eye doctor diagnosed this with the symptoms you had. You are one lucky young lady as 99% of the time these things are diagnosed on the autopsy table. He ordered a cerebral angiogram for the next day. The neuroradiologist again was impressed that my eye doctor found the root to my migraine and Horner’s Syndrome but couldn’t understand how I survived such a massive dissection with so few symptoms. As he proceeded with the test he said, “Bingo, there is my answer, you have a collateral blood supply through your forehead that less than 5% of the world population has and that is why you survived. Mary, you were healed in your mother’s womb on this one.” I just cried and thanked him for caring. The moral to the story for me is that I always listen to my body and find doctors that are willing to look for the root of my symptoms because with me, I have survived 2 carotid dissections, one with a psuedoanerysm, a LAD dissection with massive heart attack where I coded 4 times, a sub arachnoid hemorrhage (brain bleed), renal artery dissections and now I know I have vEDS. It affects my organ systems and causes a lot of pain and different things that I can’t ignore. God has put me in the right places with the right people more than one time for which I am grateful all because I listened to my body and found doctors who listened to me.

    • Dani

      Thanks so much for sharing your story on here, encouraged you to do so because I think it is really important for people to understand that it not just a one in a million shot that I found something wrong with me but that we ALL have that little inner voice and we ALL need to be our own advocate and keep going to doctor after doctor until we find the answers we need to fix whats wrong or at least address it!
      Thank you so much for sharing, you are truely inspirational and a woman of strength!

  3. Trialia

    15 years! That’s how long it took me to get an accurate diagnosis of my EDS. I even had to move districts twice to get docs who would listen to me and take all the little things and put them together! I’ve been having joint issues and gradually more different ones since I was 8 years old, but it took til I was nearly 23 to find a rheumy who would *listen*. I was brushed off with “depression” – really, mental illness can cause chronic ankle and shoulder dislocations eh? – and “growing pains” for over a decade. Lesson learned: most male doctors will not bother trying to find answers for a teenage girl; most of them think we’re neurotic and have somatization issues! I’m SO grateful I managed to avoid ever getting THAT label on my records – though “hypochondriac” is hard enough to get past with new doctors…

    I also had docs of all kinds insisting for years I had unipolar depression – despite my family trying to tell them that no, hyperactive cleaning my room in the middle of the night, bouncing off the walls and making tons of grand plans I never completed really do NOT fit with that!! I was eventually diagnosed with bipolar disorder NOS, but that took 10 years from my first episodes. And I bet plenty of arrogant male doctors would still look at this comment and call me a hypochondriac problem patient! I haven’t spent years in chronic pain trying to figure out what’s up with me and get treated for attention — I hate having to visit doctors!!

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