You know that feeling of waking up in the morning with a pulsating headache and no recollection of what you did the night before only to see the notifications on your phone regarding comments or texts you sent but have no memory of? Is that not the worst feeling as you hold your breath while going through your messages PRAYING you didn’t say anything too foolish or even worse, reach out to someone you would normally cringe at the thought of when sober?! Well this is how I woke up this morning and while I wish I could say it was my own doing from a crazy night of drinking, I am happily married and the mother of four kids so that is not the case. This is one of the symptoms from my FM that I have been dealing with for the last several months. Normally the groggy feeling and head pressure would indicate that my stents in my superior vena cava are closed but that has not been the issue this time. The headaches are more frequent and the “hangover” feeling is happening just about every morning. I wake up literally confused and not remembering what I did the night before. Tim, my husband, will often joke with me by making the night sound a lot more exciting than the fact that we really just flipped through Netflix for an hour before going to bed with nothing accomplished for the night.  Oh and how can I forget the drunk messaging.  I am drunk texting or Facebooking…without being drunk!! Ok, in all reality though it’s the little details that I tend to forget so no worries, I’m not going to forget I have kids and just take off leaving them somewhere, even though at times I might feel like doing so….but that’s a whole other blog.  These memory issues in the morning and fogginess throughout the day is due to the lack of oxygen to my brain and nights tend to be the hardest on me. I have just skimmed by on passing the oximetry sleep study which measures to see if my oxygen level drops at night however since my results are to be considered passing doctors do not want to provide any type of intervention at this time.

This blog stuff is completely new to me so I am still trying to figure out how much of my life I am willing to expose for everyone to read. Regardless of what I do share I am not doing this for sympathy….I am doing this for awareness and understanding. A lot of times when I tell people what I am dealing with I usually follow up by saying there are a lot of other people worse off than me so I can’t complain and I do really feel that way however the recipient of this conversation looks at me questioning how I can say that because from what I just told them, my situation is pretty bad. I don’t like attention but I want others to recognize I am sick and do have limits and some days are harder than others. I am stubborn and do not like my illness to hold me back so I continue to push myself to the limit. I am determined to not let this disease get the best of me and while I might push with full force that does not mean this is an easy battle for me, it simply means I am not giving in.

And finally, I will admit I’d rather have to deal with a typical hangover verses my “hangover” because that is an easy fix….just stop drinking…I mean seriously, I live with a hangover just about every day…why on earth would anyone self inflict this type of misery on themselves!! 🙂

I am extremely sad to say that a member of my FM family has just passed away.  I joined a fibrosing mediastinitis support group through yahoo when I was first diagnosed back in 2002 and then joined a group through Facebook. David Rye was a member and the stories of his pain and suffering were beyond what anyone could imagine however he still managed to make us laugh and encourage us even on the toughest of his days.  So many times he has been able to answer questions that I had as well as to know what I was going through and offer support or advice to all of us.  He is the example of a true fighter because so many times he said he would never go down without a fight and that is exactly what he did is fight all the way.  This is extremely hard on me as he was one of the first people I met with this hateful disease and has inspired me with his silly posts and knowledge of FM!  David was only 41 and has a little boy and a wife so please keep his family and friends in your prayers.

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!