Why am I blogging

I was diagnosed with a rare and life threatening disease Fibrosing Mediastinitis, or FM back in 2002, at the age of 27 with a life expectancy of 10 years.  There is no cure and very limited treatment options.  FM is the most severe, but extremely rare complication of histoplasmosis which is a fungus and can become airborne when the soil is stirred up. Those affected do not even know they have this until damage has been done and life threatening symptoms start to appear.  Histoplasmosis can produce flu like symptoms and almost all of us have been affected by this fungus however in very rare cases like myself with an immune deficiency, my body took over and began to, and continues to overly develop too much scar tissue that crushes and squeezes major veins and arteries and organs in the chest area.  Doctors once referred to my disease as being suffocated from the inside out.  The FM completely blocks my supervior vena cava which I now have 6 stents in and then my right lung was functioning very minimal so I have 2 stents in my pulmonary artery.  I have also developed mild hypertension due to my left lung and heart working overtime to compensate for the bad lung.  In 2007 I thought my FM had died out according to the doctors however on October 24, 2013 I would find that the FM was progressing with a vengeance and now attacking my lung again as well as my heart.  I am blogging to share what we have to go through when dealing with a disease that affects only about 600 people in the United States.  I have been passed from doctor to doctor and test after test sometimes for them to tell me there was nothing wrong with me and I was having anxiety or simply depressed… and this was happening AFTER I had been diagnosed with FM! Today I have a great team of doctors at the University of Iowa Hospitals and Clinics and I am finding that more doctors are becoming fascinated with me and getting out their pencils to take notes when I explain my symptoms and all that I have endured.  “Fascinating” and being “special” to doctors is really not a good thing 🙂 I hate this disease but even worse I hate feeling embarrassed for having to tell people what my disease is.  I do not look sick but am extremely messed up on the inside and my disease makes me short of breath, gives me extreme pain and pressure in the chest and head to the point I don’t even want to move or blink.  The head rushes, the memory issues, the pain, the extreme fatigue, the heart palpitations are all a part of my daily life sometimes better days than others however I have an AMAZING God and I can see how far He has brought me through this horrific journey.  I have amazing parents who were by my side when doctors gave me no hope and told me to make arrangements for my daughter.  It was my daughter Skyler who gave me the will to fight because I was going to make sure she was not going to have to grow up without a mommy and my parents fought for me to find answers…and we did.    I have an unbelievable husband who has been at every procedure and almost every appointment…and with 3 to 4 appointments a week sometimes, that says enough for the kind of man that he is.  He fights for me when I feel like giving up but most important he makes me laugh and when he knows I’m having a bad day he really puts on the charm. haha I am nobody special and I know so many others have so much more going on and I truly am blessed to have wonderful family and support.  However, the few people I know with this disease suffer miserably and we do endure daily pain and struggles that nobody else can fully understand.  I am blogging to bring awareness to this disease so that the next person who is diagnosed with Fibrosing Mediastinitis will have better treatment options and even a cure.  Not only FM but for anyone who has been in a situation that has left you to feel so alone, scared, hopeless and has had to face even more obstacles just because nobody listens.  With our own cattle operation, 4 kids, an overworked husband and a sick wife…it’s been quite the ride but we always manage to laugh.  Without God we were broken but this journey has brought my husband and I closer as a couple and a family but most importantly I am now walking with God instead of him having to carry me.  Welcome to my life!

6 thoughts on “Why am I blogging

  1. Olga says:

    Unquestionably imagine that that you said. Your favorite reason seemed
    to be at the net the easiest factor to understand of.
    I say to you, I certainly get annoyed even as other people think about concerns that they just do not know about.
    You controlled to hit the nail upon the top and also defined out the whole thing
    with no need side-effects , other folks can take a signal.
    Will likely be again to get more. Thanks


  2. Alice says:

    I was diagnosed with FM at 14 years old and am now 32. I’m so glad to know that there is someone else out there that feels the way I do and understands me Ina way that I feel noone else does. I also have MS , and was diagnose with that at the age of 24. I feel very alone in many ways and very misunderstood. It helps to know I’m not alone but always wonder what kind of life I will live as my diseases progress. God bless you!

    Liked by 1 person

    • Rebecca Lalk says:

      Hi, sorry to hear you were diagnosed with fm but hopefully you have some good doctors who have heard of the disease and will be able to help you! Progress has been made with more treatment options since I was diagnosed 15 years ago so try not to be scared and just stay on top of it with your doctors. Best of luck to you!


  3. Corrie says:

    Thanks for all the information you provided. I am sorry you had to go through this as my 87 year old father was told he may have FM after a year of pain, shortness of breath, fluid in the right lung now followed with scaring. He initially had pneumonia March 2017. December was the first time I heard of the disease. After a trip to the ER a few days ago because his heart was beating into the 120’s, and after 2nd CT scan, it confirmed that the fibrous tissue is growing rapidly. The comparison was done 3 months between scan. After meds, his heart transitioned into sinus rhythm and was released on the 3rd day. He was put on blood thinner and prednisone to see if they can stop the progression.
    prior to March 2017, my dad was a young 86 year old. No meds, exercised 5 days a weeks and traveled with my husband and I. He is Korean Vet and 3 years ago we traveled back to Korea for a re-visit and included China.
    It’s difficult to watch him in pain and see his lifestyle compromised.

    Liked by 1 person

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