19 In Personal

Being Your Own Health Advocate

 

Did you know that August is Functional Gastrointestinal and Motility Disorders Awareness Month?

That’s quite a mouthful!

I know, it’s not something people always want to talk about, but it is important!

What does it mean to have a FGMD?

“, FGIMDs are disorders of function, motility, visceral hypersensitivity, altered mucosal and immune function, altered gut microbiota, and altered central nervous system processing within the gastrointestinal system, which sometimes causes debilitating pain, nausea, vomiting, early satiety, constipation, diarrhea, and can lead to serious complications such as malnourishment, dehydration, extreme weight loss, and overwhelming fatigue” website michigan.gov

When sitting down to write a post, I thought this is most of what is on my mind currently, as I mentioned I am dealing with some health issues. No fashion today folks, I have been wearing a nightgown the better pair of 2.5 weeks, with the exception of these doc appts!

I have recently had a blood workup to check on my kidneys and liver, along with a CBC panel , which checks white and red blood cells etc. Nothing wrong there.

An Ultrasound was performed on Monday, which showed nothing.

So, now I am scheduled for an Endoscopy next Thursday.  I have already had 2 in my life, so I know what to expect. I just hope for answers.

As a part of EDS, I have GERD and Gastroperesis ( used to be called Colonic Inertia) nice huh?  I have been dealing with slow motility for about 30+ years, and know how hard it can be! It really can disrupt your life if you let it.

But…

There are some things you can do to be your own health advocate-

  • If you feel like something is wrong, don’t wait. You know  your body more than anyone. Make an appointment to see your doc.
  • Bring a notebook with you, or if your doctor allows himself to be recorded in the appointment, do so. You can go back and review notes, and you might not have taken everything in at the time. This will enable you to review or have your questions answered.
  • Do your research! That doesn’t mean believe everything you read on the internet, and I was told, if you look up something on Web MD, it all leads to bad outcomes! So, take note of the facts.
  • If you feel you are not being heard or a doctor does not take you seriously, it is time to change doctors. I know we can get comfortable with a certain doc, but if you aren’t being listened to, there will be one out there that will.
  • Ask about tests you may need.
  • Don’t wait for schedulers to call you, ( unless you know they are ones that do it in a timely manner). I called the scheduler, as waiting for one to call me about my procedure seemed unnecessary  You make the call to get your procedure scheduled, that way it will be off your mind and done.
  • With a FGMD, schedule an appointment with a dietician. There are specific foods that can be better absorbed and are tolerated better with these conditions.  Low-fiber Low -fat does help.
  • Ask questions! If you are not sure about something your doctor is prescribing, have questions about your condition, or anything else related to your health. Remember you “hired” this doctor for your health
  • Know your medications and what they do.
  • I usually take my hubby with me for support and in case I miss something . It may not happen now, with the Covid scenerio, but having support at home is important.
  • Don’t stop! If you are not happy or functioning at the level you want to be, or your quality of life has gone down, keep persuing what you need to do

So, take care and have a nice weekend!
jess xx

If you are more in the mood for fashion, check out my other posts this week on How to Style Bright Colors and My Lemon Print Sundress.

 

 

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19 Comments

  • Reply
    Christine
    August 20, 2021 at 2:45 pm

    This is a great post Jess! It’s so important to be your own advocate these days! Doctors are human and make mistakes. I always google everything before and after I see my doctor. Sometimes it’s too much information but oh well. Good luck to you!

  • Reply
    Kemi
    August 14, 2021 at 3:29 pm

    This is great advice and something important to think about – you really do need to be proactive! I hope you are able to get some answers! http://skylish.co.uk

    • Reply
      Jess Jannenga
      August 15, 2021 at 10:21 am

      Hi Kemi, thank you so much. Yes, it is so important to find a doctor who listens and fits your needs!

  • Reply
    Michelle Churchman
    August 14, 2021 at 12:48 pm

    Excellent advice! Those of us who have more unusual problems especially need to educate ourselves and advocate for ourselves. Even the best medical practitioners may miss something, and don’t get me started on the worst. I hope you get some answers and relief soon.

    Michelle
    [email protected]

    • Reply
      Jess Jannenga
      August 15, 2021 at 10:22 am

      Thank you Michelle. I know you deal with a chronic illness as well and it is so important to find the right fit in a doctor. I have had some of the worst too! I call those “one and done”.

  • Reply
    Tricia Hoffmann
    August 14, 2021 at 12:40 pm

    Hi Jess – so sorry to hear you are (once again!) having health issues. After 11 years of connective tissue disease issues (you know how long it takes to narrow this stuff down) my rheumatologist thinks I have EDS – I am in the process of trying to get genetic testing to prove this, but since Covid, the labs who do this, like North Carolina Un., are not testing yet. How did you finally get diagnosed? And I hope the docs figure out soon what is causing problems this time – you have been a real inspiration for me!

    • Reply
      Jess Jannenga
      August 15, 2021 at 10:28 am

      Hello Tricia. Thank you , I appreciate your comment. Seems we have been on a long path together. More symptoms began for me in 2008. I went to a every specialist at the Mayo Clinic, but there was no geneticist. EDS is diagnosed via symptoms and the Beighton Scoring System for hypermobility . It was my GP who knew about EDS and Physical Therapist who tested me for Hypermobility. I also have these symptoms among others.
      Recurrent joint pain (joint pain that comes back)
      Joint hypermobility (loose or very flexible joints)
      Orthostatic hypotension (feeling lightheaded or dizzy when changing positions quickly)
      Easy bruising
      Fatigue
      Soft skin
      Stretch marks (striae)
      High and narrow roof of the mouth (palate)
      Irritable Bowel Syndrome (IBS) (a disorder that causes gas, belly pain, diarrhea and constipation)
      Dislocation of joints – ( for me pelvis)
      I hope you get answers and can be on your way to treatment.
      I have had dry needling for trigger points as well as Prolotherapy.
      I hope that this is helpful.

  • Reply
    OnceUponaTimeHappilyEverAfter.com
    August 14, 2021 at 12:00 am

    Not only are you beautiful and fashionable, but wise!! Great tips that anyone dealing with health issues can apply to their own best care. I am so sorry you are dealing with such issues and that things have been worse lately. I hope the endoscopy points the direction to what is going on and that you are soon feeling back to 110%. My Prince C. has stomach issues but has not been diagnosed with anything more than GERD. He is just miserable after eating most everything. My daughter has numerous health issues, vasculitis being one. And has all kinds of digestive problems, too. Her husband is on a year-long extremely restrictive diet trying to get some help for his issues. And I can eat nails!! Hardly seems fair.

    I try to take notes at my doctor appointments but it is hard to listen, respond, ask questions and write everything down, too. Glad your husband is going with you. PC calls me Dr. Roberts (my maiden name) because I Google everything and then ‘practice medicine.’ Ha!! But I think it is better to be informed. Sometimes we are over-informed but at least we can ask some intelligent questions.

    Please keep us posted on your health, beautiful you. Maybe you could do a pretty pj post…I am in the market for some fairly affordable but good looking pjs or gowns. Help!!

    • Reply
      Jess Jannenga
      August 14, 2021 at 11:19 am

      Hi Leslie, thank you, you are sweet! GI issues are difficult, sorry to hear so many members of your family deal with it as well. My hubby is like you, can eat nails! Can eat a spagetti dinner at 10 at night… etc. I do think we can be informed as you said enough to write down good questions to ask and to know partly what to expect. I know SOMa has some nice PJs called Cool Nights! They are great for menopausal or ladies who naturally run hot. They also have pretty pjs. Target is one to check as well.
      thanks for commenting !

  • Reply
    Jodie
    August 13, 2021 at 6:34 pm

    This is so important and exactly why I go to my mom’s appointments with her. There’s so much that a second pair of ears can hear!!
    XOOX
    Jodie
    http://www.jtouchofstyle.com

    • Reply
      Jess Jannenga
      August 14, 2021 at 11:16 am

      You are so right! It does help to have another person in the room. It has been harder to do with Covid, and restrictions, but generally it is a plus.

  • Reply
    Jess Jannenga
    August 13, 2021 at 4:58 pm

    Thank you Lovely. I am glad you liked it and it is important to spread awareness about diseases – and the blog is a great tool for it. 🙂

  • Reply
    heathernoire89
    August 13, 2021 at 4:32 pm

    This was a great post. Sometimes, doctors make mistakes or they just don’t care to really help you out. Especially, when you have an immune disease issues. I went through a few bad eggs before I got a good one in terms of doctors. I wish you well and thanks for sharing this 🙂
    http://www.bauchlefashion.com/2021/08/chanels-take-on-modernism-6-bags-im.html

    • Reply
      Jess Jannenga
      August 13, 2021 at 4:55 pm

      Thank you Healther! I am sorry to hear that it took you some time before you found a doctor that could help. That seems to be the case for many, I know. Glad this could help.
      Wishing you well too!

  • Reply
    Wendy
    August 13, 2021 at 7:49 am

    I love this, Jess. Thank you,.

    I was finally told that doctors are trained to look for horses, not zebras.

    Sending you positive thoughts. Lean on those babies, they’re the best medicine.

    Wendy

    • Reply
      Jess Jannenga
      August 13, 2021 at 4:56 pm

      Hi Wendy, funny you mentioned that. The Zebra is the EDS mascot! So true, though. I appreciate it! They are! They have been with me with the worst and the best!

  • Reply
    thisblondesshoppingbag
    August 13, 2021 at 5:11 am

    Thanks for sharing this Jess, hoping you get some answers. I cannot imagine the frustration on top of the pain, bless your heart! I am praying for you girl!
    xo,
    Kellyann

    • Reply
      Jess Jannenga
      August 13, 2021 at 4:57 pm

      Thank you Kellyann! It has been a long 3 weeks! I am so ready to get out and feel better. I appreciate the prayers, thank you friend!

  • Reply
    Lovely
    August 13, 2021 at 2:15 am

    I’m sorry to hear about your health struggles and I hope you get your answers! Thank you for this awareness post!
    xoxo
    Lovely
    http://www.mynameislovely.com

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