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We Are Not Hypochondriacs! A Call For Autoimmune Voices

My story is no different from most of us in the AutoimmuneMom community.  After I was diagnosed with pleva, a rare autoimmune skin condition and Hashimoto’s in 2009, I felt lost and unsure what was next.  Doctors undersold the impact on my life and that of my family’s, saying my conditions would be treated the same as the non-autoimmune version, in the case of the Hashimoto’s.  So I was of course surprised when adding a thyroid hormone to my daily routine did very little to change the all-too-familiar fatigue and other common symptoms.  The biggest challenge in learning to live a full life with autoimmune conditions is (1) helping others understand since “you don’t look sick” and (2) finding an empathic, knowledgeable health care team.  Out of that frustration, AutoimmuneMom.com was born.

The website is now two years old (a toddler!) and the group that has gathered around is all that I hoped it would be.  I have met so many amazing women, online and offline.

One of them, who I just met in the last month, is Dr. Bonnie Feldman.  Dr. Bonnie or DrBonnie360, her more well-known online handle, is a dentist turned Wall Street analyst after she went back to get an MBA.  She has the ear of big health care companies and is a national speaker.  AND with autoimmune disease in her family, she’s on an autoimmune mission just like ours — reducing diagnosis times and advocating for autoimmune health teams and/or clinics that are made up of functional medicine physicians and specialists in diet and stress reduction support (wouldn’t that be amazing under one roof!?).

So naturally when she contacted me, I asked what I could do to help.  This is where you all come in.  DrBonnie360 is looking for multiple autoimmune condition patient voices to add to her next major speaking cycle.  If you are interested in sharing your story related to the difficulty of diagnosis and ongoing treatment, I would be so grateful.  You can contact DrBonnie360 directly: [email protected]

I also wanted to give kudos to DrBonnie360’s inspiring and helpful writings.  Her infographic, below, is published on Greatist.com, and she has two great videos on YouTube:  Lonely Voice of Autoimmune Disease and Bringing Hope to Autoimmune Disease.

Autoimmune Disease Facts

 

 

About the Author
Katie Cleary is founder of AutoimmuneMom.com.  She lives with three autoimmune conditions, her husband, kids and mini labradoodle dog in Austin, Texas.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

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Comments

  1. My name is Kimberly and my story begins in 1978. I woke up one morning, unable to move my legs or left arm and unable to get out of bed. At the time, I was only 18 years old. I went to the hospital, was admitted for a week, and aside from my psoriasis, was discharged without a diagnosis.

    As weeks went by, I continued to worsen. I developed red raised nodules on the shins of my legs. They were warm to the touch and very painful. The doctors were baffled and again sent me home without a diagnosis.

    After a few weeks of horrific pain, my father carried me into a different hospital, where I was admitted with concern from the doctors there may have been fluid build-up in my ankles and I would never walk again. Fortunately, there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis and Erthema nodosum. They thought it could have also been polio or rheumatic fever, and so I spent six months in a wheelchair. I was given a final diagnoses of psoriasis, sarcoidosis, Erthema nodosum, and lupus. Along with receiving steroid injections in my ankles, I took liquid painkillers just to be able to walk and function.

    In May 1995, I gave birth to my second son by C-section. During this three day experience, I started having severe tremors and headache. The nurse said it was normal after a C-section. I didn’t agree, as they were involuntary and uncontrollable.

    Finally, my husband and I left the hospital and took our baby home. Two nights later, I went back to the E.R. with severe headaches and raised blood pressure. The doctors gave me a CT scan, a shot of Demerol, and sent me home. They said I was fine. I knew I was not.

    The next day, I literally woke up feeling like I only had my head in the bed! I could not feel my body parts from my neck down to my toes, with no control of any movements. I was numb and unable to walk. Later, I came to learn the name of this experience as “proprioception,” something we all need to learn about.

    When my speech started to slur, my husband drove me back to the hospital. By the time I entered the emergency room, I had no vision, and within hours, I became paralyzed. I was unable to respond to any of the doctor’s commands; I could hear every word, but simply did not know how to respond.

    After being admitted for weeks and undergoing many, many tests and countless procedures, along with the occasional Nitroglycerin put under my tongue every few hours, the only diagnosis that I received was that I had postpartum psychosis and needed to see a psychiatrist. I remember a neurologist checking my balance, and because I had a slight responding reflex, he said I was fine. Mind you, I still could not see or walk correctly, nor could I drive a car as I didn’t know how.

    After quite some time, my vision finally returned as tunnel and “mirror like” vision. I was discharged with 1mg of prescription Ativan 3x a day, as it calmed the tremors. I did see a psychiatrist and had a neuropsychological evaluation. It was my psychiatrist who said I had every symptom of Multiple sclerosis and suggested that I see an MS specialist. So I made an appointment to see an MS specialist who finally diagnosed me with Multiple sclerosis. He deemed me to have a host of other autoimmune related diseases as well, and was very upset that no other physician recognized the MS on all four past MRIs I had brought him to read.

    In June of 2001, it was confirmed, I had a secondary disease diagnosis called Multiple Sclerosis. I had to undergo speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication that I was now addicted too for the tremors as it was shutting down my digestive system. All of this was a result of being misdiagnosed. I have had unnecessary surgeries, physician appointments, and countless diagnoses from so-called professionals telling me it was all in my head. One doctor wrote a letter to my psychiatrist that he spent over an hour counseling me on my symptoms and complaints.

    I am hoping that telling my story here would be of great knowledge to bringing awareness to overlapping autoimmune-related diseases such as MS. My hope is that my experience can help all of the newly diagnosed MS patients with overlapping diseases as well as their family & friends. My being a patient for example, as well as a testimonial to all of the above experiences, it is my wish to let others know that the complaints and symptoms are real, not all in our heads and that no patient should ever have to go through any of the trials I mentioned.
    Today I have ITP, Psoriatic Arthritis, Sarcoidosis, Lupus and Psoriasis so I have a host of autoimmune related diseases.
    I am now a volunteer Support Group Leader for http://www.aarda.org and we are the first autoimmune support group in the Nation. Our meetings are held once a month, every 2nd Saturday of each of these months from March through November only for the comfort of our patients. Each meeting has a professional speaker that donates their time as we are a nonprofit oranization looking for sponsors. Meetings are held at 16151 Henry Ford Medical Pavilion, 4th floor-conference room 3. Please contact [email protected] or http://www.aarda.org for more information about our local Detroit area support group meetings. Free to the public.

    • Katie Cleary says:

      Kimberly, I’m so happy to have your story attached to this post. It is an incredible story and I am grateful for all you do for awareness and support of others in your local community. It’s hugely valuable to have an in-person support group, as so few cities have them. Love and thanks to you and I hope you are feeling well these days.

      • Thank you so very much Katie, and all that I ask is that you spread the word as I do about autoimmunity as I feel together we can make our voices heard loud and clear and I also want to thank you for all of you hard work and never ending support for others.
        God bless and I pray for your good health.
        I am always here for you!
        xoxoxo
        Kimberly

  2. Scleroderma and Me The day my world changed in jan. 2004
    .
    January 27, 2012 at 2:26pm

    Hi My Name is Sandy In Jan. 2004 I was Diag: with Systemic Scleroderma That was the day my whole word Changed and along with the Systemic Scleroderma I have LUNG FIBROSIS AND Sever Pulmonary Hypertension./ Esophagus and Swallowing Problems Connective Tissue disorder Digestive System and Gastrointestinal tract Problems Rheumatoid Arthritis(RA) Rayunaunds Syndrome Chronic Fatigue~~~~~~~I have my Good and Bad day and sometime my Worse days I have learned to no my body and I know when thing our really bad ! I also have a Hiatal Hernia.

    Looking Back I see now with all the Indigestion and eating rolaids like candy and a Few Times in the late 70 and early 80s it was starting then and also Thinking back to when I had to have my Thyroid out in 1984 and My Gallbladder Out in 1986and Thinking back I was aways Cold~~~ Before My Diag In 2004 Jan. I had been running a Low grade fever and was coughing for more then a Mo. My Doctor tryed everything and Nothing Help me feel better so he run the Lab Test and then I got the Diag: That I had Systemic Scleroderma Had all The Test in the Book and My Ra doctor Also Com firmed said it was Scleroderma and sever RA Now years Later and thing our getting some what worse I take so many Meds to try to slow it down But I Will Fight Until the End and keep the Hope One day we Will have a Cure! Staying Positive and Strong I believe Help your Outlook on your Life with Scleroderma It’s a Hard Fight But I Know we can Win our Battle~~~ So to all My Scleroderma friends and there Family keep the HOPE and KEEP On fighting~~` WE Together Can WIN ~~~ Yes I have Scleroderma and More But it dose not have Me! and I Also Battle Breast Cancer in Jan. 2008 Had a Double Mystic Now 4 Years Cancer Free!Fear Is The Unknown Through Knowledge-In HOPE WE OUR NOT ALONE Shine A Light on Scleroderma((((I got this from one of our Sd Angels )))So with COMPASSION and HOPE~~~ and A POSITIVE MENTAL ATTITUDE~~~ WE CAN WIN OUR BATTLE! One Thing I for got to Add is the Pain we Go Threw every day all Over our Body in our hand Legs and feet Pain thats so Bad you can”t function or even get out of bed

    HUGS and LOVE TO all Of you FROM My HEART TO YOURS

    Me & The Hubby

    • Katie Cleary says:

      Sandy, thank you so much for sharing your story. You have been through SO much. Hugs and love back – you are so right about compassion, hope and positive thinking. Huge congrats on being cancer free for 4 years. You are amazing!!! xo

  3. Judy Hall says:

    Since the day I was born I have had health issues. I have had over 10 surgeries, gallbladder, Hoshimoto thyroiditis, and others. I also have Alopecia Areata and I am being referred to a Reumatologist and having more tests for possible Sjogrens Syndrome or other autoimmune diseases. For many years my friends and family thought I was a hypocondriac and even I wondered if this was all in my head. But every complaint ended up being a real problem and not in my head. I was told a couple years ago I had Autoimmune disease. I had had my thyroid removed and was never told it was Hoshimoto an autoimmune disorder until my new Dr. read my medical records and mention the Hoshimoto disease and that it was an autoimmune disorder. I was angry that the Dr. who did the surgery never told me. I have had pancreatitis, dry eyes,mouth, nose and ears, vaginal dryness and itching, dry skin, dry cough and trouble swallowing, neuropathy, TMJ, and other symptoms that may be Sjogrens or something else. Finding a good Dr. that takes Autoimmune serious is hard. I keep fighting to get to the bottom of the problem. I would just like to have a few days when I didn’t feel like heck. I am 62 and have no family or support as I go through this but keep trying to find a support group where I live but there aren’t any. All I have is the internet to get support from and it has been a great help. I hope more will be done to help those who suffer from Autoimmune Diseases. Thanks

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